En español | As COVID-19 ravaged the country last spring, Kirstin Johnson-Nixon's family was hit harder than most. Both her parents were hospitalized, and her father spent time on a ventilator. She and her husband, Charles, fought the fevers, chills and coughs at home. Two of their sons tested positive, though they experienced only minor symptoms.
Through it all, Johnson-Nixon worried most about never being able to see her parents again, afraid they would die alone.
"That was my biggest fear,” she said in a recent conversation about surviving COVID-19. “You live to be 86 and 87 and then you just pass away by yourself."
Now that everyone is on the mend, Kirstin, 55, and Charles, 57, are sharing their experiences with the physical and emotional toll of the disease, and urging others to follow best practices like masking and social distancing. Their message is especially urgent in the African American community, which has been hit hardest by COVID-19 — a Kaiser Health News analysis found that Black Americans 65 to 74 died of COVID-19 at five times the rate of white people in the same age group.
The couple hopes to counter the hopeless feeling that many Black people have, as well as the distrust many have of the medical community.
"The reaction is, here we go again,” Kirstin says. “Here's another thing that affects us more than it affects any other group."
That just makes it more important for the message to get out, Charles says.
"I've been on a mission to make people understand that we all have to take this seriously and change the way we do stuff,” says Charles, an assistant principal in a middle school south of Minneapolis. “One thing I want to say to people: ‘I spent 12 days thinking I might go to the hospital and die. That's why it's important for your child to wear a mask.'"
Telling Their Story
In the Nixon-Johnson family, COVID-19 struck with a vengeance in May.
Both of Kirstin's parents were hospitalized. The disease attacked Charles’ and Kirstin's lungs and caused terrifying fevers. Two of their three sons tested positive. Caleb, 17, lost his sense of smell. Raphael, 14, who has asthma, struggled with breathing. Judah, also 14, took a test, but the lab lost it. Although he had no symptoms, the family monitored him closely and kept him quarantined based on their doctor's advice.
Everyone survived, but even months later, they all feel lingering side effects, whether it's reliving the terror of the fevers, struggling with breathing, or coping with a diminished sense of smell. Still, everyone feels well enough to warn others about their struggles with COVID-19.
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Shortly after Charles and Kirstin recovered in June, they described their experience to a local television station. “It was 14 days of misery,” Charles told the reporter. In July, the African American Leadership Forum invited the family to join a virtual town hall to discuss the disease along with a doctor, a nurse and a community activist. In August, Charles participated in a webinar with the Alpha Phi Alpha chapter of his alma mater, North Carolina Central University.
Kirstin, a social worker for the Minneapolis Public Schools, has spoken to a group of school social workers about the impact the disease had on her family. She plans to speak at an event next spring organized by social workers at the state Capitol, and the family's story has been featured in various news outlets.
'A wave that hits you'
In their church, at work and throughout their community, the Johnson-Nixons are highlighting their fight against COVID-19 because they feel people are underestimating the disease. They acknowledge, however, that avoiding risks is complicated for many people who need to keep working to pay for housing, food and other essentials. “For many people in our community, keeping yourself healthy and safe is almost an afterthought,” Charles says.
But the couple's message remains clear: Take all potential preventive steps because fighting the disease is worse than you can imagine.
The Johnson-Nixons continue to make their health a priority, monitoring their lasting symptoms closely.
"I need to do some things to keep my health strong,” Kirstin says. She has not recovered her full lung capacity, which she feels during walks in the neighborhood, and her allergies feel worse than usual.
Charles has a coughing fit every morning, and he often stops to catch his breath after climbing a flight of stairs. And he still feels the strange sensation that took over his body when his fever spiked during the worst of his illness. “It's almost like a wave that hits you and you couldn't do anything to stop it,” he says.
Even their sons have felt the lasting impact of COVID-19. Caleb struggled to regain his sense of smell. When it did return, “everything smelled the same, like musty body odor,” Kirstin says.
Rafael is using an inhaler more than usual and is less active. “He's very aware of where his inhaler is now,” Kirstin says. “He wasn't that way before."
Kirstin's parents continue to struggle. Her father still uses oxygen, and her mother's dementia seems to have worsened. Yet, she says, she is “grateful every day” that her family is alive and improving.