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KCUR's Gina Kaufmann brings you personal essays about how we're all adapting to a very different world.

From a tent in the woods, this Kansas City woman advocates for her fellow COVID long-haulers

Amanda Finley feels at home at Weston Bend State Park, overlooking the Missouri River.
Carlos Moreno
/
KCUR 89.3
Amanda Finley feels at home at Weston Bend State Park, overlooking the Missouri River.

After losing her apartment, Amanda Finley sought refuge at a Missouri campsite she calls her "happy place." Even as much of the country returns to normal, she's working to remind people that COVID long-haulers are still coping with illness and income loss.

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When friends aren't putting her up in a hotel room, and she doesn't have a house-sitting gig to fall back on, Amanda Finley lives in a tent at Weston Bend State Park.

Make that tents, plural. Her main tent, which she thrifted for $7, has a leak, but it's roomy enough for her air mattress. The other tent is small and doesn't leak, so she drapes that over the bigger tent. Finley considers the combo a major win, even if doesn't look that way from the outside.

Finley tries to claim the campsite closest to the little red cabin with bathrooms and laundry, but the real draw is the electrical outlet — it allows her to keep her phone and computer charged, and keeps her connected to the rest of the world.

Finley's long path to these woods began on a Friday, in March 2020, when she came down with a cough.

"It progressed over the weekend to the point where that Monday I was so sick, I could not move," she says. "And I realized I needed help."

This was before COVID-19 testing became widely available. Back then, you still had to qualify for a test — if providers even had them.

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Carlos Moreno
Finley lives in Missouri, but she's part of a worldwide community of long-haul COVID-19 patients seeking answers.

Finley went to a free health clinic where they sent her for a chest x-ray. The images of her lungs featured the tell-tale "ground glass opacity," a hazy white-flecked pattern common in COVID-19 patients. "It's pretty distinct," Finley says.

Up until that point, Finley — who's in her 40s — had worked delivering groceries. She had spent a lot of time in the car listening to news about the quickly-developing pandemic.

So Finley went home, locked the door, and got in bed, determined not to come back out until she felt better.

Finley didn't leave her apartment for months — enduring the lengthy illness trajectory now recognized as "long-haul COVID."

It should be noted that Finley isn't a homebody or shrinking violet by nature. A bald, former opera singer who favors bright lipstick, Finley bounces onto the scene like Tigger from Winnie the Pooh. She loves regaling company — when she has it — with tales of many past lives, occupations and adventures.

"At the time, we didn't know, like, when, when do I stop being contagious? And if I get sick with anything else on top of this, as damaged as my lungs were at the time, that might do me in as well," Finley explains. "I just got into this mindset of, 'I am an indoor cat now.'"

Even before COVID-19 forced her to stop working, Finley was teetering close to the edge, financially.

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Carlos Moreno
Check-in at the Weston Bend State Park campsite still reminds visitors to keep 6 feet between groups for safety.

"My income leading into that was gig work," she says. "There's no paid time off when you're doing gig work. You work or you lose your home. I was like, 'I have to think of something. I have to think of something that I can do from home.'"

For a while, she taught online classes for kids, but fatigue intervened. "I hit a wall a couple of months in where I just could not," Finley says. "Like, that was when the long COVID really hit and I could barely sit down without falling asleep."

Finley spent the summer of 2020 in a fog. As fall approached, Finley had fallen behind on her rent, and with a month and a half remaining on her lease, the management of her apartment complex notified her it wouldn't be renewed.

"There was nothing to argue," she says. "It was the end of the business contract."

By then, however, Finley had become part of a tight-knit online community of fellow patients. In search of support and information, that July she'd launched a Facebook group called COVID-19 Long-Haulers.

"I started the Facebook support group realizing, 'Oh my God, I'm not alone, there are two other people I know of,'" she recalls. "'Let's start a group. We'll find 50 people and be miserable.'"

Even today, the financial toll of long-haul COVID may be less appreciated than the physical toll. As lingering illness prevented many long-haulers from returning to work, Finley's community of thousands turned into more than a clearinghouse for information — it became a mutual aid society.

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Carlos Moreno
Finley says the colors blue and yellow represent long-haul COVID awareness.

After losing her apartment, Finley crashed with more than one fellow long-hauler. She jumped from house to house until the anxiety of crowded living conditions — in a pandemic that had cost her so much already — sent her packing.

One night after dark, in June 2021, Finley left a friend's basement, where she was staying, and headed for Weston Bend State Park, about an hour north of Kansas City.

"I was just like, 'You know what, if I'm in a tent, no one is breathing my air,'" Finley says. "I'm just gonna go to my happy place. Weston Bend State Park has always been my happy place."

There's no overstating how much Finley loves this spot: She's been coming here regularly for 26 years. Nestled in rolling hills with a glorious leaf canopy overhead, the campsite is tucked inside the expansive park where Lewis and Clark once famously explored.

"For other people, this is just, 'Oh my gosh, is that safe?' Of course it's safe," she says. "There's a gate up there. It's locked at night."

Finley stopped driving due to neurological issues — she gets disoriented — but her energy levels have increased. She says she'll figure out a new way to make a living one day, but it won't be grocery delivery. "It wasn't working to begin with," she says.

In the meantime, Finley works from her tent — or sometimes a hotel room — making video testimonials on social media about the experiences of COVID long-haulers like herself.

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Carlos Moreno
As she regains her energy, Finley is happy to be photographed without looking forlorn.

"I started leaving video comments instead of typing them in, like, 'No, you're going to look at me. You're going to see my face. I'm going to tell you something, you're going to listen to it.'"

Finley's videos have caught the attention of CNN International's Michael Holmes — who interviewed her in April — and Atlantic science writer Ed Yong — who quoted her in an extensive article about long-haulers.

Finley wants to remind the world that COVID long-haulers are still here, that anyone could join their ranks, and that their wellbeing requires a solution more robust than friends helping friends through emergencies.

Many of the long-haulers Finley knows are faring worse than she is: One friend in Texas died this summer because he didn't have $60 for medicine. "We are literally dying because we can't afford to live. This is unacceptable," she says.

For now, Finley's engaged in kind of a financial trust fall, doing advocacy without knowing what will sustain her or for how long. Something falls through, something else comes along.

She doesn't have her own apartment, but she does have a scenic overlook facing the Missouri River. When she takes me there, she beams with joy. "That's my river!" Finley shouts.

At some point soon, though, this idyllic landing place may not seem so idyllic after all. The leaves are changing color and swirling to the ground.

Winter is coming, and that little cabin with a bathroom and laundry? It just closed for the season.

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