Comedian Garie Lewis stands on stage in a dimly lit backroom of a bar in Sutherland in northwest Iowa. Overhead, on the plywood wall behind him, hangs skulls and antlers of deer and even a moose.
“They could be the heads of the comedians that came before me, I don’t know,” Lewis joked.
Fairly early on during his act, he gives the crowd of a few dozen disclaimers.
“August of 2022, I got COVID and I never, I never quite got better, and it, it, it, it has affected my speech it has affected my cognitive abilities. It has affected my balance and the the symptoms may, may, may, may make you think that maybe I'm drunk,” he stuttered.
Lewis takes on a tough audience with a few intoxicated hecklers. An hour later, he stops a little shorter than expected.
“With the COVID stuff, it's just, I spent it all up there," Lewis continued. "My leaving stage was abrupt because I was empty.”
A few days later, Lewis still feels fatigued when talking from his apartment in Sioux City, where disability benefits help pay his bills. His only other income is a few comedy shows a year.
“It has messed up every aspect of my life, just the way I’m communicating now. That’s not how I talk,” Lewis said. “The loss of energy has made it impossible to be any kind of dependable for anybody because I never know when it’s going to hit.”
The physical impact of long COVID
The CDC reports about 7% of adults in the U.S. reported experiencing long COVID, with 1 in 4 experiencing significant problems.
There are more than 200 symptoms, and Lewis knows a few of them, including the extreme fatigue, brain fog, pain and sometimes his body moves uncontrollably.
"It didn’t kill me, and I’ve always been grateful for that part because it took a lot of people I knew.”Garie Lewis, who suffers from long COVID symptoms
“It’s like somebody has a light switch attached to my brain and they’re turning on and off and you just kind of jerk. It’s like a marionette on strings," he added. "It didn’t kill me, and I’ve always been grateful for that part because it took a lot of people I knew.”
Johns Hopkins reported more than 900,000 confirmed cases of COVID in Iowa when reporting stopped in September 2022. Nearly a quarter of Iowans testing positive that year said they experienced long-haul symptoms that stretched on for three or more months.
The Iowa Department of Health and Human Services does not track data on long COVID.
“The hardest thing for me to is to explain it," Lewis said. "I mean, I’ve had two-and-a-half years to try and figure out how to describe it to people who have never felt it."
What's even tougher for Lewis is dealing with the people who attack him on social media.
“I still get people calling me phony, calling me a fake," he said.
But long COVID is real. The term is applied to someone with symptoms lasting more than 30 days after their infection.
Researcher tries to uncover the mysteries of post-COVID syndrome
“Some people’s symptoms are very mild, where they’re more of a nuisance. Some people’s symptoms are very disabling, where they’re unable to do much of anything. So it can be a very life-changing to people,” said Dr. Andrew Vasey, a long-COVID researcher.
Vasey oversees a long COVID clinic at Nebraska Medicine in Omaha, where people from all across the region, including western Iowa, seek help. A majority weren’t hospitalized when initially catching COVID.
Vasey says not a lot is known about long COVID. It does appear to affect the part of the nervous system that manages things people don't normally think about — their heart rate, their breathing.
"What we do seem to know is a lot of these symptoms really go towards autonomic dysfunction, or dysautonomia," Vasey said.
Vasey admits treatment can be tricky because every patient is unique and can experience problems from head to toe. “The hard part is, there's not a test for long COVID — it's a clinical diagnosis."
Another challenge is there aren’t a lot of experts in the field. A post COVID-19 clinic at the University of Iowa Health Care in Iowa City closed last year after the primary provider moved on. Patients now visit pulmonary experts and other physicians instead.
“Hard part is, there’s a lot of demand — and I guess the access is limited in different places," Vasey said.
He says more than half of people suffering with lingering ailments eventually get back to normal.
“Not because of any doctor did anything, but a lot of it is time — with nerve dysfunction, the good thing is nerves can get better," he said. “The best way to not have post-COVID symptoms is not getting COVID in the first place, so doing things like getting vaccinated.”
Trying to find a new normal after COVID complications
The past five years haven’t been kind to Erin Webber-Dreeszen of Sioux City. She travels more than 100 miles to Omaha for appointments, including at Nebraska Medicine.
“My whole body is out of whack, like it’s just not doing what it’s supposed to be doing,” Webber-Dreeszen said.
Home health services drop by most weekdays. Nurse Miranda Dawdy checks Webber-Dreeszen's vitals on a recent visit.
“Do you have any pain or discomfort anywhere?” Dawdy asked.
“Everywhere!” Webber-Dreeszen said.
Webber-Dreeszen’s health issues escalated after a month-long respiratory illness in February of 2020 — even before the first official case of COVID in Iowa. Since then, one thing after another, including lung damage, chronic fatigue, and recently heart and acute kidney failure.
“I flew under the radar for so long that I think I’ve been routinely dismissed. I think that happens with women."Erin Webber-Dreeszen, a long COVID patient
“I flew under the radar for so long that I think I’ve been routinely dismissed. I think that happens with women. I know it does,” Webber-Dreeszen said. “I don’t know how many times they wondered if this was just anxiety.”
Her cardiologist finally ruled it as long COVID.
“I kind of liken it to almost like my motherboard has been hacked, and that my body isn’t processing resources and information appropriately," Webber-Dreeszen said. "So every time something happens. I’m just like ‘okay, well, here’s another thing.'”
Webber-Dreeszen once held a high-profile job as development coordinator with the Sioux City Art Center. She spent a year working from home until her condition forced her into early retirement almost two years ago. She felt abandoned by former co-workers she considered friends.
“My doctor was like, your work environment is toxic. You’re not getting better because of all of the stress you’re having to deal with,” Webber-Dreeszen said. “That’s a real struggle to try and figure out who I am now and I think that anybody who’s experienced a major illness or devastating diagnosis is they understand that, it’s your whole life, and what you knew to be is gone.”
Now she takes 17 different medications, including an Alzheimer's drug for memory. It's all an effort to find relief that doesn’t come.
"I’m 47 and I’m terrified I’m not going to survive this —and I’ve had a sense for a while that something is going to get me," Webber-Dreeszen said.
Through her fear, Webber-Dreeszen tries to find focus. She’s working toward a master’s degree and strengthening relationships with her mother, children and even her health care team.
“I have tried through all of this, to look at everything like, 'okay, where’s my silver lining where I can draw some strength and get through this?'” she said.
During a recent visit, Dawdy hears fluid in her lungs, a lingering issue from one of two hospitalizations this year.
“I just wish you could feel better,” Dawdy said.
Even with a dire diagnosis, Webber-Dreeszen imagines a future past all this.
