What is it like to have long COVID? Utah teacher shares his story

Ben B. Braun, Deseret News

It’s an anniversary that should be forgettable.

In January 2022, Blake Bockholt tested positive for COVID-19 on the first day of a new semester at the Northern Utah Academy of Math, Engineering and Science charter high school in Layton, where he and his wife teach.

“That was a gut punch,” the bearded 36-year-old said, recalling his disappointment at having to announce to a roomful of brand-new students only a few minutes into English class that he wouldn’t see them again until he recovered.

He also had to put on hold training for a nearly 50-mile, rim-to-rim-to-rim run at the Grand Canyon later that year, the latest test of endurance planned with the same friends who’d introduced him to long-distance running and canyoneering.

Still, Blake thought then, at least now he’d have time to focus on finishing an article for The New York Times about how he teaches his students to write profiles as part of the newspaper’s “Learning Network.”

After all, how bad could COVID-19 be? The youngest of his three children, 8-year-old Aubrey, got sick first, but with the extremely transmissible omicron variant of the virus spreading rapidly through Utah, he realized the whole family catching it was inevitable.

At first he felt no symptoms, but later there were headaches and body aches from the virus. Still, Blake said he never got “terribly sick.” The kids bounced back, although his wife, Allison, a math teacher at the same school, struggled for a few weeks with brain fog.

By the time he was able to return to the classroom, Blake said he was ”feeling great” except for some slight fatigue that left him a little more tired than usual at the end of the school day.

At that point, he and his family believed they’d gotten through COVID-19 relatively unscathed.

“We’ve got this,” he remembers thinking. “We’re one of the lucky ones. It didn’t affect us too much.”

What Blake didn’t know was that the real hit to his life would come after he thought he was through with COVID-19. More than a year later, he’s teaching from an electric wheelchair, so tired most of the time that even the simplest tasks are often overwhelming.

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Ben B. Braun, Deseret News

There were hints of what was coming.

When his initial symptoms ended, Blake decided it was time to resume his long weekend runs. He counted on the dozen-plus miles he and his friends logged together weekly on scenic but challenging routes to keep him in shape physically as well as mentally.

His wife initially talked him out of going for a run the same week he resumed working.

“She was like, ‘Don’t be stupid.’ She convinced me not to run that weekend,” Blake said. The following weekend, though, his friends planned a 15-mile run. “We were amping up for that Grand Canyon run,” he said. “So I ran that 15-miler.”

How he felt afterwards turned out to be an early sign that COVID-19 wasn’t done with him.

The run wiped him out for the entire weekend, but Blake didn’t immediately connect his increasing fatigue with what’s known as long COVID, the name for a variety of post-infection symptoms that can linger for months and even years.

The aftereffects of the virus crept onto his Facebook page, largely used to showcase photographs he’s shot over the years of animals, especially birds. The close-up portraits confront the viewer with details like the bright red eyes of the black-necked stilt shorebird.

Mixed in among those posts are references to the role COVID-19 was claiming in his life. A photo of a newly prescribed inhaler showed up in mid-February 2022, accompanied by advice to take the virus seriously.

By the end of that month, he’d acknowledged in a post, “I have Long COVID, and it sucks. Breathing has become increasingly difficult. Now, instead of running 15 miles, walking 15 feet winds me.”

Still, Blake kept trying to put the disease behind him.

“The mountains and canyons are getting closer,” he posted in April, even though in an accompanying video about finishing his first three mile run in months, he was panting so hard he had to pause between words.

The next picture of Blake in his Facebook feed appears less than a month later. He’s wrapped in blankets, asleep on the living room couch. His wife expresses her frustration at doctors not being able to find anything wrong with him as his condition worsens.

“I don’t know why COVID hit Blake so hard,” she wrote. “But, it’s really hard to watch him still struggling so much. The man that can normally conquer mountains can barely get through normal day-to-day tasks while heavily relying on multiple inhalers.”

That spring, a 15-foot trip to the dinner table from the bedroom sent Blake to the emergency room. Despite napping while his wife cooked, he was still so tired that he didn’t have the strength to pick up a fork.

“I put my head down,” he said, unable to eat.

Gasping for breath, Blake dragged himself back to bed. But not for long. His breathing was so labored he realized he needed help, so he slowly and painfully made his way to the family car so his wife could take him to the hospital.

“I was terrified he was going to die,” Allison said of having to rush Blake to the ER. Was it a clot in his lungs? Damage to his heart? Doctors weren’t able to pinpoint a cause that night, or during subsequent office visits.

“It was just this awful game. They would do another test,” Allison said, but everything kept coming back normal, leading to doctors suggesting it might be anxiety or some similar issue.

After waiting more than a month for an appointment for Blake at the University of Utah’s long COVID-19 clinic, Allison said she burst into tears and had to leave the doctor’s office when she realized they were there to get referrals to specialists, not a definitive diagnosis.

“No one has answers,” she said. “Sometimes I get mad. Not at him, just at the situation.”

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Scott G Winterton, Deseret News

Dr. Jeanette Brown, the medical director of the U.’s long COVID-19 clinic, said she understands.

“I’ve always felt bad for some of the patients that come to us. We’ve always tried to set expectations,” said Brown, who has not treated Blake. “But I think there are people who come to us and think we have all the answers up front. It’s still a work in progress.”

Providers, too, struggle with a lack of specific markers for what constitutes long COVID-19, she said. There’s no standardized testing to determine that’s the cause of fatigue, difficulty breathing, painful joints, rapid heartbeat or other symptoms.

“It’s very much a moving target at times,” Brown said, adding, “I know it’s hard. People do want to believe we have the magic fix.”

But for around a fourth of the clinic’s patients, symptoms continue to persist. The average age of the clinic’s patients is 47 and nearly 70% are women, she said, and many had never had to deal with ongoing medical issues.

“The great American way is we want everything fixed, super quick,” said the doctor, who also treats patients with chronic respiratory failure as a result of ALS, muscular dystrophy and other diseases.

There’s a learning curve for long COVID-19 patients whose symptoms can only be managed. For them, she said, “wrapping your mind around how to adapt can be a really tough gig, especially for young people.”

That’s how it’s been for Blake.

“The acceptance that this is long term has come very slowly. There was always the end of the school year, the end of summer,” he said, recalling that even when he first recognized he had long COVID, he thought it would be “a fast bout” lasting no more than a month or two.

But then came the emergency room visit, when he had to use a wheelchair to get X-rays.

“That was the first time I was in a wheelchair,” Blake said. “That was a hard moment.”

As was being diagnosed with a panic attack after tests could find nothing else wrong. Soon, Blake said, he’d figured out there wasn’t much he could do anymore that wouldn’t trigger breathing difficulties.

So he all but gave up.

“I found a balance for the summer. You don’t do anything. You just sit on the couch. There’s not much exertion,” he said. When he needed to catch his breath, he’d lie down. All that rest wasn’t making him better.

A visit to a specialist, a pulmonologist, that July wasn’t much help, Blake said, but he and his wife were already expecting to hear there was nothing that could be done. Still, it was all taking an emotional toll.

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“You go from running to the top of mountains to not being able to do much. You can’t make it from the van to the sidelines of your kid’s soccer games,” Blake said of starting to feel worthless. “There’s no end in sight.”

One night, he sat at his computer and started searching online for what the insurance death benefit payout would be for suicide. That’s when he realized how much damage long COVID-19 had done.

Scott G Winterton, Deseret News

Allison was already aware his mental health was “not good,” he said. “I didn’t tell her how bad it was that night, but I think I did the next day,” he recalled, recognizing that he needed to seek out help.

Trying to explain what it meant to connect for the first time with others suffering with long COVID-19, Blake becomes emotional.

“It felt like Alcoholics Anonymous,” he said of his initial Zoom session. “I just started talking and that group of folks knew just what it was like. They knew the grief ... the no answers. They understood.”

It’s something he knows his wife can never see in the same way despite being “the best” partner and putting up with so much as a result of his ongoing illness that, Blake said, “my heart hurts for her.”

Allison said hearing her husband describe his despair was terrifying. Her reaction was to take a “practical approach,” focusing on how much insurance money there would be and how long it would last.

She said she told Blake, “I need you to know dying is not going to make my life better.”

It was a conversation Allison had feared would happen.

“He was definitely super depressed. I saw it. I was sad and scared but I wasn’t surprised,” she said, calling it a turning point in his illness. Now that’s he’s getting help, Allison said her husband can still become “really sad” without sinking as low as he did that night.

“The suicidal ideation is real” for people with long COVID-19, Blake said. “I want them to know, more so than their physical health, they’ve got to manage their mental health.” Even though compared to coping with physical problems, that can be so much harder.

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Ben B. Braun, Deseret News

Troy Andersen, a licensed clinical social worker who runs Blake’s virtual long COVID-19 therapy group, said serious depression and suicidal thoughts are not uncommon among participants.

“We’ve had many, many of our group members that have had struggles,” Andersen said. Some, like Blake, had been incredibly active and healthy before becoming deeply discouraged over their inability to reclaim that lifestyle.

Cardiovascular exercise is one of the best non-pharmaceutical ways to treat mental health issues, Andersen said, so “when a person is physically incapable of doing that, it’s very tricky to replace.”

Add in the uncertainty surrounding recovering from long COVID-19, and coping becomes even harder, he said.

“The darkness of the true unknown is very difficult to physically and emotionally manage,” Andersen said, adding, “It’s devastating. You get a little bit of hope and the rug gets pulled out.”

What makes Blake’s situation different from many others with long COVID-19 is the level of support he has, especially from his school, where administrators help monitor his condition and have allowed him to cut his workday short when the fatigue becomes overwhelming.

“I think he’s in a unique spot because his work has been so globally accommodating,” Andersen said, unlike other workplaces where those with long COVID-19 “either have to keep showing up and doing the work as previously expected or they lose their jobs.”

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It was the school’s vice principal, Brenda Casper, who drove Blake home last fall when he realized he didn’t have the strength to finish out the day. Casper, who has fought her own battle with cancer, regularly checks up on both Blake and Allison at school.

“She even texted me over the summer to see how my long COVID was going — while she was getting chemo. She’s amazing,” Blake said. By the end of September 2022, he said he’d already cried twice in her office.

Brenda said what first drew her and others to Blake was his energy.

“He was a high energy guy,” she said, always telling stories about his latest trail runs, with a “great sense of humor, very witty. I think he is a people person (with) unique abilities to bond with adults. And certainly our students love him.”

COVID-19 has made teaching harder for him, Brenda said as she fought back tears.

“I see a teacher that loves what he does and he gives everything to our school and his students, our students,” she said, adding, “some days the energy might not be there. You can see it on his face, the toll that it is taking, and the worry.”

Although he can’t move around the classroom in the same way he once did, Blake has even more to offer his students now by providing inspiration to confront their own challenges, Brenda said.

“Some of the best lessons Blake will teach are happening this year. And it doesn’t have anything to do with English,” she said. His students “get to see how resilient he is. He’s showing up on hard days and digging in and contributing. ... He’s a professional.”

That added element of learning is something the school administration, including Principal Kelli Booth, talk about all the time, Brenda said, along with how they can be supportive of Blake and Allison.

“We’re limited on the things we can do. We can’t take away his fatigue. We can’t take away the shortness of breath, things like that,” Brenda said. But there are substitute teachers at the ready, a microphone to amplify his voice in the classroom and help with grading papers.

“We want him to know, ‘We’ve got your back,’” she said, noting the school’s faculty members are constantly checking in to see what assistance they can provide. “We’re in for the long haul and want to do everything we can.”

So do his students, sending him cards, letters and even drawings to express their thanks for his efforts in the classroom despite his difficulties.

“I always admire your energy even when you don’t feel the best. You make class so enjoyable. I’ve learned so much from you already,” a student wrote, punctuating the statement with a hand-drawn heart and the words, “Thank you.”

Another offered thanks to Blake “for your dedication to help me and my fellow students learn more about English, even with your long COVID condition. It really shows how much you care about us.”

One included a drawing of a dragon described as inspired by Blake, “who lost his wings in an accident. But he goes round and used his magic to uplift others. He’s the Perpetual Dragon of Perseverance.”

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Ben B. Braun, Deseret News

The bright red electric wheelchair Blake now depends on to get around was purchased used on Facebook Marketplace for around $800, paid for with money friends raised at a 5K race last November.

Blake had planned to join the runners along the Turkey Trot route in his motorized scooter, but ran out of breath after getting himself and his scooter out of his truck. So he waited at the finish line.

Ben Whitesides, an assistant soccer coach and school counselor at Syracuse High School, had seen Blake transform quickly into “a pretty elite trail runner” after taking up the sport a few years ago.

“We would run and push ourselves and just see how far we could go, how high we could go and stuff like that,” Whitesides said of hitting the trail with Blake and a longtime friend. “Blake was just as fit as us within a year. He was really getting into it.”

When a 50-mile race on Antelope Island was cancelled in the early days of the COVID-19 pandemic, they ran it anyway. Later, they ran up and down California’s Mt. Whitney, the highest peak in the continental United States, in less than nine hours.

The next big challenge for the trio was supposed to be the Grand Canyon run. But then long COVID-19 ended Blake’s time as a trail runner.

“For us to do the Grand Canyon without our third guy, it was like losing the Three Stooges,” Ben said. “Not having him there was really hard for us. And hard for Blake, too. We wanted to include him in our running.”

But Ben said he realized sharing videos of their exploits with Blake made him feel bad for what he was missing. When Blake joined the pair on a paved trail aboard his scooter, Ben said there was laughter but also sadness.

Whenever he runs now, Ben said he thinks about Blake and the stories used to tell on the trail.

“All the time. All the time. I just wish he was there,” Ben said.

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Ben B. Braun, Deseret News

Lorraine England, a nurse practitioner at Utah Cardiology Farmington, saw Blake late last year, one of more than a half-dozen patients with long COVID-19 she treats in a typical month.

Among them, “chronic fatigue has been a real common thread,” she said, especially for those who caught the coronavirus in 2022. Many had mild symptoms that went away quickly but then, weeks later, were hit by fatigue that stubbornly sticks around.

But chronic fatigue syndrome is “a diagnosis of exclusion,” England said, after other issues such as heart problems are ruled out. “We don’t have a great underlying cause. However, we have a cluster of symptoms that put them in this category.”

Those symptoms include not feeling refreshed after resting, so daily activities are impacted and any exertion requires an extended recovery. Chronic fatigue can also cause problems with memory.

For Blake, much of the lab work needed to rule out other issues had been done, England said, although he needed to wear a heart monitor and have an ultrasound to make sure he didn’t have structural heart problems.

She said Blake has both chronic fatigue syndrome and another common diagnosis in people with long COVID-19, POTS, postural orthostatic tachycardia syndrome, where the heart rate jumps when someone moves from sitting or lying down to standing.

Both are treated by managing symptoms, England said, like using medication she prescribed to Blake to lower his heart rate, and advice that while some activity is important, overexertion should be avoided.

Even without a cure in sight, she said having a diagnosis and a treatment plan in place can be a relief for long COVID-19 patients who’ve felt alone in their health battles because their symptoms haven’t been taken seriously.

But England can’t tell them when — or even if — they’ll get well.

“With this, the frustrating thing is I don’t know the duration of how long this will affect them, if it’s something that will continue onward for years. If it will ever resolve,” she said. “Especially with COVID, we don’t know those answers yet.”

Blake’s case is “pretty severe,” England said, but there are others in his situation. And while a lot of her long COVID-19 patients do gradually improve, she said Blake’s prognosis is unclear.

“Unfortunately, I don’t really know. I don’t have a great answer for that. I know those who suffer from chronic fatigue and POTS and those kind of issues, it’s usually something that’s a struggle for years,” England said. “I know that some people never feel like they get better.”

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Ben B. Braun, Deseret News

Blake marked the January anniversary of testing positive for COVID-19 with a party thrown by his friends and family, complete with balloons and a cake decorated with an expletive directed at COVID-19.

While he had fun, the day was also difficult. Around that time, he’d also read about new research suggesting long COVID-19 symptoms like fatigue may be neurological, caused by nerve damage that interferes with breathing or other normally automatic functions.

“We’ve got some names for this now,” Blake said, including dysautonomia and post-exertional malaise, both of which can be managed but not cured. “Those are lifelong so it’s likely I’ll be handicapped the rest of my life.”

He’s no longer seeing any health care provider for his long COVID-19, citing frustrations over hearing his extreme fatigue being described as “annoying” rather than life-changing, and prescribed physical therapy that crashed his energy.

“Every time I go, it’s emotionally draining, like you’re trying to get ready for no answers, but you still get your hopes up,” Blake said. He does continue to monitor what’s happening with other long-COVID-19 patients in Utah via social media.

Once they’re having “better experiences,” Blake said he’ll be willing to try medical care again. So far, though, he said he’s seeing “tons of people spending lots of time and money and not getting answers.”

Blake said he’s been taking a hemp-based CBD product that eases his breathing and chest pain. But even though he feels he’s better at managing his symptoms, there’s no expectation his condition will improve.

“I wake up every morning catching my breath. I go to sleep catching my breath. It no longer scares me,” he said, adding, “I’ve had to come to accept this is what my life is and what it looks like now.”

Still, Blake is upbeat. After skipping most family outings and vacations, he’s joining his wife and children on a trip to New York City this spring. They’ll bring Blake’s electric wheelchair and stick to sites close enough to their hotel that he can easily return on his own to rest.

“We’re tackling it just like a canyon,” he joked, even though long COVID-19 has made him “allergic” to exercise, something that once brought him so much joy. Now, he’s finding that in his photography as well as in everyday moments, like time spent with his three children.

“I’m in a weird spot now,” Blake said, recalling watching from his wheelchair recently as Aubrey along with Jack, 11, and Josh, 13, scrambled up red rocks at a park in St. George and “weeping because it was so beautiful.”

Embracing what his stillness can reveal is “almost like I’ve aged 30 years, where I no longer have to be at the top of a mountain to experience awe and beauty and joy. I can sit in a wheelchair and watch my kids.”

His family is “planning on living with this and still living a beautiful life,” Blake said, adding, “Those dark times, they still come. I’m not scared of them anymore but I just manage them. ... I know these feelings. They suck, but they will pass.”