Coming to grips with the reality of long COVID-19

May 24—MANVEL, North Dakota — The pandemic may have waned for most people, but for Jason Keating, it remains a constant daily battle — one he's been dealing with for more than two years.

"It's been very much like a roller coaster," said Keating, superintendent and high school principal at Midway Public School.

The last six to eight weeks have been "the worst stretch," he said. "I feel it more (physically); it takes a toll on you mentally."

Keating contracted COVID-19 in November 2020, during his first year as superintendent at Midway School.

"There was a big difference in how I felt," he said.

He thought the stress of his new job "was not allowing me to get healthy," he said, and that once he was more comfortable in it, the illness would subside.

It didn't.

Over time, he has dealt with "all sorts of different symptoms," he said, but he clung to the hope he'd get better.

"I would talk myself into what I wanted to believe — like, I can take a week off and I'll feel better. That just isn't reality."

For the past month or so, he's been working from home about 80% of the time, he said.

Since contracting the virus, COVID has robbed the 37-year-old of his usual vigor and, earlier this year, prompted him to make the "extremely difficult" decision to resign from his position at Midway effective June 30, he said. "It's not something I'd do, or consider doing, if I was healthy."

Early on, about a month into COVID, Keating said he was advised by doctors to "just go, go, go, and pretend it doesn't exist. They said, do what you can do and go from there."

More recently, though, medical professionals seem to be retreating from that stance, Keating said. And this spring he decided that he needed to stop "pretending" he wasn't in the grip of COVID.

"It's had major effects on every aspect of my life," he said. "I felt that by burning the candle at both ends, I wasn't going to get better. There's only so much my body can handle now. ... Now, I need time."

The announcement earlier this year by Chicago Blackhawks Captain Jonathan Toews that he was stepping away from hockey due to long COVID influenced Keating's decision to resign, he said. However, he plans to accept a less demanding, less stressful job as a math teacher at Manvel Public School this fall.

His commute this fall will decrease from 17 to 2 miles, he said. "Driving sometimes bothers me — it's like your eyes are working, but not working together."

The federal government declared an end to the COVID-19 public health emergency as of May 11.

In Grand Forks County, for the week of May 11 there were seven reported COVID cases in total, said Shawn McBride, epidemiologist for Grand Forks Public Health.

On May 11, the seven-day average of new cases was 1.4 cases per 100,000 people, he said. That's the rate that is used to compare Grand Forks with other communities.

The public health unit does not keep a record of the number of long COVID cases, McBride said, because how to define long COVID "is really being explored; we have a working definition, but it's challenging to define because it (presents) such a broad range of generalized symptoms."

Vaccinations for COVID are still available and recommended, especially for those who haven't received the initial shot or the bivalent booster yet, McBride said. He recommends talking with your health care provider about the timing of that vaccination, which should be based on a person's health risk or the health risk of people with whom they come into contact.

Keating first noticed COVID symptoms in the fall of 2020. In the past two and a half years he's been dealing with "all sorts of different symptoms," he said, including a "kind of hungover feeling that's always there, and nausea and headaches — and a lot of those (symptoms) have been amplified. It's hard to describe."

He is sensitive to light and sound sometimes, and grapples with muscle and joint pain and headaches, he said. Not long ago, "I couldn't get out of bed for the better part of a week."

He still deals with the problem of temperature regulation, he said, noting that he will feel hot while working out, then break into a cold sweat.

"Then just like that (he snaps his fingers) I'm hot — I'll have a low-grade fever. There's a lot of funky things with it," he said.

His body and joints "have tightened up," he said. He's developed arthritis in his hips.

During past doctor visits to Mayo Clinic, Keating concluded that physicians have some grasp as to why symptoms occur, but not necessarily how to treat the illness, he said.

These days he has less contact with Mayo physicians.

"They're still struggling with what can be done medically," he said. Most of his medical care is provided locally by a primary care physician and neurologist and he's consulted with a couple of specialists.

Since his COVID diagnosis, Keating has noticed that any movement raises his heart rate, he said. "That's one of the recurring symptoms. I went from 60 as resting heart rate, to 110 or 120."

This is one of many signs COVID has taught him to watch for, he said, and he's made changes in his lifestyle in response.

He monitors the oxygen levels in his blood and heart rate multiple times daily with a fingertip oximeter and takes allergy medication — in case it can help with breathing — a daily vitamin, and B12 and vitamin D supplements.

Before COVID, "I was not an unhealthy eater," he said. "If it was green, I didn't always go for it." Now, he's much more focused on adhering to a healthier diet.

"I used to do fruit smoothies," Keating said. Now, he reaches for things like spinach, kale and avocados to make variations of smoothies that provide more protein, which is key to keeping up his strength.

Smoothies make it easier to consume those greens, he said. "You just slurp it down ... (and) you have to remind yourself constantly to drink water."

While battling COVID, he has never permanently lost his sense of taste and smell.

In his basement workout room, he does various physical exercises daily, including yoga and weight-training, to build and maintain upper and lower body strength. Almost every day since February, he's been taking a half-hour soak in the hot tub on the back deck of his home, in freezing as well as mild weather.

Keating has turned from using a treadmill — which was too strenuous on his joints — to using elliptical and Bowflex equipment.

"The kids have gotten into it too — that's been nice," he said. "They take turns, getting 15-minute spurts on the elliptical.

His children — Cora, 9, and Jaydan, 7 — who are physically active and love sports, "are pretty aware" that their father's illness has curtailed the time he can spend with them, Keating said. It's a stark reality, a burden that seems to be ever-present on his mind.

"It's been a struggle," he said. Sometimes, due to the illness, "I would go to work, go home and go to bed."

When the COVID symptoms strike — including bouts of nausea and vomiting — the kids are there to comfort him, he said. "My son will bring a cold rag to put on my forehead."

Keating is keenly aware that his wife, Amanda, "has shouldered a lot of the burden through all of this," he said. COVID has put "extra stress on her to raise the kids alone.

"There still are good times. We can go outside, but not all the time, like it used to be," he said. "Physical activity played a pretty big role in our lives."

Daughter Cora told the Herald, "It's been really hard for me." She talks regularly with a school counselor about it, she said, and that has been helpful.

Not long ago, Cora broke down, telling her mother that she missed her "old" dad, Keating said. "(COVID) affects everybody, every day. It's a game-changer, that's for sure."

Amanda Keating said the struggle with COVID "is something I never thought we'd have to go through. I'm trying to do my best to be attentive to his needs and try to keep things going."

"It's been very difficult for myself and mostly the kids. I try to shelter them as much as possible," she said, noting that she and Jason have been honest with their children. "They do understand that he's sick."

"I've always looked at our marriage as a team, and I may have to carry the heavy lifting for a time — to be there for each other," she said, noting that, in the past, "the roles have been reversed" and he's been there for her.

Keating does what he can to embrace and maintain a positive attitude, he said. "I put on a smile. I didn't give validation to COVID."

And he's become less willing to pretend it's not there.

"I've kind of taken a step back from that," he said. "I let people know what the struggle is that I'm trying to keep to myself. I let people inside a little bit. There's a fine line between 'woe is me' and allowing people to have those conversations. It's good to have those conversations."

It's difficult at times, though, because the effects of his illness are not always obvious and there's a lack of understanding.

Ultimately, he said, "You have to keep a positive attitude. Otherwise, it's a slippery slope."