Life wasn’t always like this for Libby Pederson.
She used to know how to dress herself in the morning without notes. Cooking dinner did not confound her.
That changed in November, when the 44-year-old got sick with the coronavirus and developed mysterious neurological symptoms that landed her in the hospital. Ever since, Pederson has been struggling to heal from what doctors say can be a little-known, little-understood consequence of the virus: persistent and debilitating brain and cognitive problems.
On the worst days, the days when she sits on her couch or stays in bed, Pederson wonders if she’ll return to being the busy and capable single mom and special education teacher at an Anchorage elementary school she was just two months ago.
“I feel like I’ve lost who I am,” she said.
Virus and the brain
The way coronavirus wreaks havoc on some patients’ respiratory systems has been well documented. But scientists are just beginning to understand how the coronavirus can affect the brain.
Researchers around the world have been compiling documentation of COVID-19 patients with neurological symptoms ranging from psychosis to memory loss, according to an article published in the journal Nature in September. The people experiencing neurological damage often aren’t otherwise very sick. And they aren’t always older, either.
“We’ve seen this group of younger people without conventional risk factors who are having strokes, and patients having acute changes in mental status that are not otherwise explained,” a UK neurologist said in the Nature article.
It isn’t clear whether coronavirus actually has the ability to enter the brain, or whether a haywire immune response to the virus causes inflammation, according to Nature. It’s also not known exactly how many people in Alaska have experienced neurological symptoms like Pederson.
“Complications of COVID-19 infection are not reportable to the Alaska Department of Health and Social Services, so we do not know how many neurological complications have occurred in Alaska,” said Joseph McLaughlin, chief of the Alaska Section of Epidemiology.
“I was just wanting to die”
Pederson’s coronavirus experience began unremarkably: On Nov. 13, her daughter held up a scented candle for her to sniff and she smelled nothing. The next day her ability to taste vanished. Pederson hurried to get a COVID-19 test.
By the time she got the positive results back, her head was throbbing with a level of pain she’d never experienced before, even as a longtime migraine sufferer. Headaches are among less common but still recognized symptoms of the coronavirus.
Pederson says she spent days “curled up in the fetal position” in her darkened bedroom. Her 20-year-old daughter took care of things around the house, she thinks.
“It was just wanting to die in my room,” she said. “I really honestly don’t know what happened that week in the house.”
On Nov. 18, the pain drove her to the emergency room. The acute pain dissipated with time, but her thinking and speech remained murky -- like driving in the dark without headlights.
By early December, “things just weren’t making sense,” she said. She would turn on gas burners and wander away. She began to stutter. Her children found her dressed in snow gear, standing in the pantry. She couldn’t explain what she was doing there.
When Pederson called her primary doctor for help on Dec. 2, her speech was so broken by stuttering she was told to hang up and head to the emergency room, she said.
That’s where she encountered Dr. Ben Westley, an Anchorage infectious disease specialist.
Westley said he was initially concerned that Pederson, because of her neurological symptoms, had viral encephalitis -- a very serious but straightforward diagnosis. Tests revealed she did not. A sensitive MRI of Pederson’s brain did find inflammation, said Westley, who was authorized by Pederson to discuss her medical treatment.
The symptoms she continues to experience -- persistent, debilitating trouble with concentration, memory, attention, speech and fatigue -- fall into a category of COVID-19 damage that’s poorly understood.
“It seems pretty clear to me now that she has some form of other lingering symptoms related to COVID-19 that we really don’t understand very well,” he said.
What Pederson is experiencing is distressing, but he’s confident that she will continue to recover, Westley said.
“The whole thing is scary,” he said. “When you get it and you feel terrible and you just don’t feel better -- that’s stressful, hard thing for anybody.”
Getting back to normal
Five weeks after her COVID-19 diagnosis, Pederson’s days are filled with therapy appointments: occupational, physical and speech.
At a recent physical therapy appointment, she practiced walking on a treadmill, working on her balance. At occupational therapy, she studied a sample electric bill, trying to answer questions like “What is the total amount of your bills?”
As an elementary school special education teacher, she finds herself applying techniques she uses with her young students, such as teaching them to break complex tasks down into smaller, more manageable chunks.
She leaves herself notes about the steps she needs to take to get dressed. Making dinner requires a detailed plan.
“I have to constantly think through the whole meal: Turn the burner off. Wash the dishes. Things that were common sense before,” she said.
There’s no real long-term prognosis because what happened to her is so rare. Working with young special education students and their families has helped her both to see the work ahead, but also to have hope.
Some people think she’s on vacation, or don’t believe she’s sick because she physically looks OK. COVID-19 affects every person differently, she said, and “it’s just luck of the draw, how it affected me so bad.”
“I’m not enjoying this. I’m not having fun,” she said. “I feel like I’ve gone to hell and I’m trying to dig my way out.”
ADN photojournalist Emily Mesner contributed reporting to this story.