Pandemic hits 'stop button,' but for some life is forever changed

The end of the U.S. COVID public health emergency on May 11 comes with a set of policy changes, and it also brings a sense of closure to an extraordinarily difficult time. But for many people, life before and after COVID are markedly different.

As NPR reporters have covered the twists and turns of the pandemic, they have talked to hundreds of people – local public health workers, long COVID patients and people who lost loved ones to COVID, among many others. NPR called several of the people interviewed over the past three years back this week to ask for their reflections and hear how the end of the public health emergency strikes them.

The Bereaved Son

Miguel Lerma, 33, Los Angeles, California

In March 2021, Miguel Lerma had just lost two granduncles to COVID. It followed the death of his grandfather, Jose Aldaco, also of COVID. For the Aldaco family of Phoenix, Ariz., these three deaths – within six months of each other – shattered a generation of men.

More tragedy followed for Miguel Lerma. Last May, Jose's wife, Virginia, – Lerma's grandmother – died after a series of strokes. Lerma was raised by his grandparents and refers to them as "mom" and "dad."

"That was the last parent that we had left after the pandemic took away our dad from us," he says. "We really weren't prepared for that as we were still dealing with losing my dad." Virginia had recovered from a severe case of COVID for which she'd been hospitalized, and Lerma's family wonders if the strokes may have been a post-COVID complication.

Before the pandemic, Lerma was a high school dance teacher. He loves dancing and teaching but during the pandemic, the job was not the same. After a period of virtual schooling, the return to in-person learning was rough. "The students didn't have any motivation or determination," Lerma says, "They just did not give a damn anymore." For Lerma, who was grieving the loss of his family members, "trying to force these kids to care about class" began to feel like a drain on his well being.

Lerma moved from Phoenix to Los Angeles last June. He took a job as a city bus driver, which is easier, he says. "Now, I don't take work and the stress of it home with me," he says, "I'm able to handle my mental health a little bit better, and cope with what I need to cope with post-pandemic."

The health insurance benefits that come with the job haven't kicked in yet, so Lerma is working to process his grief on his own, without the help of a therapist. Like most people, he's ready to move on from the pandemic. "I'm triple vaccinated," he says, "I don't wear a mask but I make sure I wash my hands. I feel like I'm taking care of my side of the street." But it feels unfair to Lerma that some people are moving forward with much heavier burdens than others.

Lerma considers his new start a way to honor his family's legacy. They came to the U.S. from Mexico to give him a better life. "I got to go to high school, I got to go to university, I get to have jobs with my Social Security and everything," he says. Choosing to move forward is what his grandparents would have wanted. "I want to be an example to my little sister to show her that no matter how tragic our life has been, it's still worth living," he says, "And we have to find our own happy." Lerma considers himself a work in progress. He's continuing to grieve and to dance, as he finds a path forward from the monumental losses he experienced in the pandemic. --Pien Huang

The Long COVID Patient

Semhar Fisseha, 41, Brooklyn, New York

In November 2021, Semhar Fisseha shared how her COVID-19 infection morphed into long COVID and upended her life. Once an active parent, she became debilitated and needed a wheelchair for a time.

"It's a strange feeling," Semhar Fisseha says of the end of the pandemic declaration. "Now there's kind of like a stop button happening, like, 'OK, we're done with this public health emergency,' but there are thousands of people that are still left dealing with the impact of it, including myself."

She says she's now in a better place with her health and no longer needs a wheelchair, but she's still getting a handle on what triggers an episode for her. "I learn new ones all the time, but the main ones are not eating on time, not eating enough, temperature change – if I go from cold temperature to heat, I know my body is not able to function," she says. "My body kind of shuts down – I start slurring my words, I move really slowly. And then if I don't remedy it, [for example] if I don't have a snack – it's weird, it's kind of like I'm awake, but I'm in a coma. I'm aware of everything that's going on, but I lose my mobility. I can't command my arms, my legs."

As the declaration ends, "I think it's a bit early to tell how that will impact long haulers," Fisseha says. One worry she has is that the decrease in data reporting will affect long-COVID research and its funding. For instance, there may be people who get COVID and have lingering symptoms, but ones that are not serious enough to go to the doctor – those cases might be missed, which could affect how well the condition is understood. "There's still so much to learn and know," she says. --Selena Simmons-Duffin

The Contact Tracer

Malachi Stewart, 35, Washington, D.C.

Contact tracing exploded in the early days of the pandemic as a way to help contain the spread of the new virus in the absence of vaccines or much scientific understanding about how the virus spread. Malachi Stewart of the D.C. Department of Health changed over from contact tracing sexually transmitted infections to the COVID-19 team. He explained his job to NPR in April 2020.

"Three years – that went by really quick," Malachi Stewart says. "We were in crisis mode – we were solving problems; we were removing barriers. It's a shift from that crisis mode back to the front end, which is prevention; back to meeting people in the middle, which is education; and then on the back end, doing treatment." There are also innovations the health department made during COVID that are staying put, like a program for at-home STI testing.

One thing he celebrates about the pandemic is that it helped more members of the public understand what the health department is and what it does. "We know how to make people feel like they're not just a number – one patient said 'a petri dish of infection' – but you're a person," Stewart says of those early interactions he had when people were first getting infected.

There have been many stories of local public health workers leaving the job because they faced threats or vitriol. Stewart says yes, sometimes fear makes people lash out, but he says he doesn't take it personally, and that there were plenty of positive connections that are less likely to make the news. "People are afraid, people are processing," when you tell them on the phone that they are positive, whether for COVID-19 or any other infection. "And so when you're in that space with people, that's not personal. So you may have gotten people on the phone who were yelling, who were screaming, but they answered the phone the next day – that's where the care is." --S.S.D.

The Public Health Manager

Claire Hannan, 56, Rockville, Maryland

Each state has an immunization manager who coordinates vaccination campaigns. Claire Hannan is the executive director of the group that coordinates all these coordinators – the Association of Immunization Managers. Over the last three pandemic years, she's spoken to NPR dozens of times.

When COVID vaccines first became available, the shots were in short supply, the distribution was chaotic, and every health department was doing its own thing. Claire Hannan saw her job as "herding a bunch of cats." After toiling behind the scenes on children's vaccinations for decades, immunization managers around the country were called to roll out life-saving vaccines that could end the pandemic. "Suddenly the limelight was on us," Hannan recalls.

Before the pandemic, most public health vaccination efforts were focused on children.

"And it was like, 'Are we going to be able to step up and do everything we know we can do for children? Can we do it for adults?'" she says.

Vaccines for adults were disorganized and diffuse. "You could have adult providers, pharmacists, family physicians, gynecologists, OB-GYNs giving out vaccines, all in the private sector," Hannan explains, "There was no interaction with public health agencies."

The COVID vaccine rollout came with data reporting requirements – the government wanted to know how many vaccines were going into arms, as first and second doses; how many were being wasted; who was getting them, based on age, race and sex. "We started sharing data in real time, capturing the doses administered and sharing with CDC – something that had never been previously accomplished, enrolling hundreds of thousands of private providers," Hannan says.

As the health emergency ends, "It's an exciting time to look back at some of the accomplishments and really think about how to sustain them," Hannan says, "I hope we can learn some lessons about having stable funding for public health services, because there's nothing more basic than providing life-saving vaccines and making sure everyone has access to them."

In one of many conversations with NPR from her basement, in the seclusion of the pandemic, Hannan defined normalcy as partying in the parking lot at her daughter's college lacrosse games. She's been back at it: "I have just had the most fun tailgating at my daughter's lacrosse games this past year. Being able to have those events with people you don't ordinarily see – I missed that so much during the pandemic," she says.

Amid the many losses brought by the pandemic – the loss of many lives, the loss of trust in science and vaccines due to politicization – Hannan holds room for optimism. She's working to repurpose the adult vaccination system – hastily thrown up for COVID – for diseases like shingles and RSV. "We can do better against routine diseases," Hannan says, "We can make progress in preventing them." --P.H.

The Immunocompromised Patient

Dr. Vivian Cheung, 55, Bethesda, Maryland

In January 2022, in the middle of the omicron wave, Dr. Vivian Cheung became one of the lucky few to get a shot of Evusheld, a drug for immunocompromised people that could help protect them from getting COVID. The drug was in short supply, and getting it required a fair amount of sleuthing and advocacy, as she told NPR last year.

Dr. Vivian Cheung takes immune-suppressing steroids to manage a rare genetic disease and she relied on her connections as a pediatrician and research scientist to get Evusheld. Getting the shot didn't change Cheung's behavior – "Except for work, I don't go out at all," she said at the time – but it gave her some peace of mind.

Now, as the public health emergency ends, the nation's in a much different place. "For immunocompromised people, it's good that the case counts are coming down, but in some way we're even less protected, because we don't even have Evusheld now," Cheung says. Evusheld was taken off the market this January, since it did not work against newer circulating variants.

Cheung still feels vulnerable, but she's been able to venture out. Beyond work, she'll go to the grocery store (at 6 in the morning, when nobody else is there). She's gone to a few conferences and dined indoors once. Still, she draws the line at crowds and long flights.

Masks were in her life before COVID and they remain part of her daily routine. She thinks the pandemic raised people's awareness of disabilities and vulnerabilities, but worries that grace and understanding is fading. "[Now], when I see another person wearing a mask, I feel like it's nice not to be the only one," she says. But the other day, as she stood on the street in a mask waiting for an Uber, someone walked up and chastised her, saying, "Don't you know that COVID is over?"

As the PHE ends, Cheung worries that gaps in data reporting will leave vulnerable people at greater risk. She'd like not to be a canary in the coalmine – or in COVID terms, a patient sick in the hospital – that alerts others to an impending wave. She's eager to get all the protections available to her, and to help jumpstart new ones. She keeps tabs on a second generation Evusheld, currently in development, and asks her doctors frequently when she can enroll in the clinical trials. --P.H.

The School Superintendent

Alena Zachery-Ross, 50, Ypsilanti, Michigan

Educators also stood on a fault line of the pandemic, as COVID safety protocols interfered with school attendance. Superintendent Alena Zachery-Ross told NPR about how the "test-to-stay" policy was playing out in her Michigan school district in December 2021, after the CDC recommended letting students exposed to the virus stay in school if they tested negative.

Alena Zachery-Ross laughed to herself when she got NPR's interview request about the end of the pandemic. "We're still impacted every day," she says. In fact, a board meeting she was going to was just canceled because the person leading it is out with COVID, she says. "Businesses, schools — we are still figuring this thing out."

They are also dealing with the aftermath of that first pandemic year – the closures, the immense stress on parents and kids and teachers and administrators. One positive legacy of that stressful time was a moment of appreciation as parents saw teachers try to run virtual classrooms. "People were like, 'Oh, my gosh, I don't want to be my child's teacher! Please, please send them back to school! I value the teacher, the bus driver, the cooks, because I want everybody in school!'" she recalls. "I did see that people valued it – they might have forgotten today, but there was a love for educators everywhere."

There are lasting changes from the pandemic in Ypsilanti schools, Zachery-Ross says. The ventilation systems are different; there are hand sanitizer dispensers all over the place, and more of an awareness about staying home when sick, she says. The district was also able to scale up access to laptops for students who needed them. Plus, parents and schools got more used to coordinating and communicating with each other, she says. "I think we can do some of those takeaways that can continue now – so that gives us hope." -- S.S.D.

The Nurses on a New Mission

Joshua Paredes, 35, and John LeBlanc, 33, San Francisco, California

In January, 2022, Michael Odell, a 27-year-old critical care nurse died by suicide. His death became a rallying cry for health care workers' mental health. It pushed a group of nurses, including Odell's closest friends in the profession to start a non-profit organization called Don't Clock Out to support nurses experiencing mental health crises.

"It's been a huge learning experience going from this pandemic and starting the organization," says Joshua Paredes, Odell's close friend and former roommate. "I knew there was going to be a need, but I'm pretty shocked at how much support my colleagues are really needing."

The organization provides peer support, with weekly virtual meetings for health care workers anywhere in the country experiencing burnout and other mental health issues.

"We had to add an extra meeting because we realized that it's not just nurses that need support, it's actually the entire health care team," says Paredes.

According to Paredes and his colleagues at Don't Clock Out, work remains a major source of stress and moral injury for health care workers. Moral injury is the sense that healthcare professionals have had to work in situations that violate their ethical code and have been let down by their employers with ongoing staffing shortages.

"It's been a very tough three years for everybody," says LeBlanc, a nurse at UCSF Health. "I've had stress-related medical issues."

The end of the public health emergency declaration has "brought up a lot of things that I really tried to forget," says Paredes. "It's something that we really can't forget. We've got to learn from what we've gone through, take that with us."

He and the co-founders of Don't Clock Out are concerned that the lifting of the declaration will lead to loss of access to care, especially mental health care.

"There will be an inevitable discontinuation of mental health services for people," says LeBlanc, who recently lost access to his therapist. "They made the decision to focus on their in-person practice as opposed to their telehealth clients."

He is still waiting to find a new therapist, because most therapists have long waitlists for new patients.

Such gaps in access to care "is really dangerous," he says. "We've seen it personally impact us and our friends."

But what gives Paredes hope is the fact that healthcare workers are increasingly recognizing the need to support one another, both for their mental health and to fight for better work environments.

"We're kind of uniting in new ways, we're unionizing, we're communicating across disciplines," he says, "all under the motivation that we're building something new to replace what hasn't worked in the past."

LeBlanc feels the same way.

"My sense of hope is definitely rooted in these volunteer-led organizations and health care worker-led organizations, that have a passion that's rooted in their experiences during the pandemic," says LeBlanc. "These organizations serve solely to support nurses, residents, other health care workers through the damage that the pandemic has done or the damage that was done prior to the pandemic that we weren't able to talk about openly."

He's also heartened by the fact that there's less stigma now to talking about mental health issues.

"Being able to talk openly about our mental health and our mental wellness is huge," he says, and it's not just in the healthcare field. "I'm able to have conversations with my family about mental health that I never have dared to have before."

All of this led LeBlanc to want to work as a mental health practitioner. Starting this fall, he will be attending a Masters program to become a psychiatric nurse practitioner.

"It seemed like the right time to kind of go into the advanced practice role in that field," he says. --Rhitu Chatterjee

If you or someone you know may be considering suicide or is in crisis, call or text 9 8 8 to reach the Suicide & Crisis Lifeline.