For many, COVID-19 is anything but over.
From the medically and economically vulnerable to those on the front lines of the health-care system’s continuing and exhausting battle, the Star spoke with people this week who are very much still living through the realities of this health crisis.
These are their stories.
Siobhan McKittrick, physiotherapist
Siobhan McKittrick works with COVID patients who’ve only barely survived a severe infection.
The registered physiotherapist helps those who’ve spent months in hospital recovering from the virus, many on ventilators in a critical care unit, through their rehabilitation at the Bickle Centre, one of five Toronto Rehab sites.
“When patients first arrive, they need help with everything they do,” she says, describing the long hospital stays as having “deconditioned” their bodies, with some unable to initially swallow or walk on their own. “Often, they can’t move their limbs very well at all. They generally require a mechanical lift to get them from the bed into a wheelchair.
“It’s basically starting from scratch in a way and seeing how far we can help them progress.”
McKittrick says seeing the daily struggle of those trying to recover from a severe COVID infection has given her a unique perspective on the pandemic. The once-daily — and now weekly — Ontario data on COVID infections, hospitalizations and deaths has a different meaning for her, especially the figures that track those who’ve recovered from infections.
“Some of those COVID-recovered were our patients, and working with them, seeing what they went through, they didn’t feel recovered,” says McKittrick, also an interprofessional educator at the Bickle Centre, a part of University Health Network. “Thankfully, they didn’t die. But they basically have a life in front of them which is vastly changed.”
She understands “that strong push to return to how things were before,” and why some already feel as if the COVID crisis is over. But she also knows, after seeing the number and the range of patients that are severely affected, she can’t yet accept living right now as though the pandemic has ended.
At the same time, she adds, she has hope that the accumulated knowledge about the virus and the ways we can reduce risk will blunt the impact.
“I don’t really see it anymore as waiting for the pandemic to end; I can go on with my life, I can do the things I want to do by just making some small modifications like wearing a mask, getting vaccinated … We just need to change how we do things, and these changes can be positive, especially when it’s for the greater good.”
Bella Haefele, 13
Andrea Haefele’s teenage daughter, Bella, has been out of full-time school for almost three years.
Her parents pulled her after first hearing about the novel coronavirus in the winter of 2020, knowing that Bella would be in danger of getting dangerously ill if infected.
Bella has many varying disabilities and complex medical needs. She is visually impaired, is on the autism spectrum, and has been diagnosed with a rare genetic neurological disorder called Pitt-Hopkins syndrome.
“She is 13 years old, but cognitively at the level of a one-year-old,” says Haefele, while describing her daughter, who communicates with the aid of an iPad and uses a wheelchair to go long distances.
Asked about Bella’s likes, Haefele has a long list: playing soccer; swimming; her autism assistance dog guide, Kadence; all dogs, in general; her younger brother, Petie.
“They’re good buddies. She’s very social; she loves being out and about.”
Keeping Bella home from school was a huge shift for the family, and for Bella herself “socially, emotionally and physically,” Haefele says. (Bella is back this September, but only part time.) COVID also caused the community and hospital services she relies on to scale back or shut down.
“If I were to compare her to my son, someone who is non-disabled and has definitely had disruption in their day-to-day life, I would say for someone like Bella, who has various disabilities, the pandemic disruptions are amplified times 100.”
Haefele makes it clear that she’s always had to advocate for her daughter to be included. But COVID has made it even harder, from not prioritizing services and spaces for those in the disabled community to dropping mask mandates in public spaces, shifting the infection risk to the most vulnerable.
“Different people need different things in order to be part of a community. What works for one does not work for all.
“And I think that starts from who is making the decision, why they’re making the decision and how they’re making the decision. Because in the end, it’s always the people who are marginalized, who are impacted the most, whether it’s race, ethnicity, income level, or families like mine who are disabled.”
Virginia Parraga, long-term-care resident
Throughout the pandemic, avoiding COVID has been top of mind for Virginia Parraga. At 82, with underlying health issues, including a heart condition, Parraga is concerned that if she contracts the virus, the effects could be devastating.
As a resident of Kensington Gardens, a long-term-care home in Toronto, the risks to Parraga and her 350-odd fellow residents are very real. Long-term-care homes have been among the hardest hit settings, particularly during the virus’s first deadly wave that killed some 1,500 residents. And even though the number of fatalities among residents has gone down with the arrival of the vaccine and antiviral treatments, those with existing health conditions can see their quality of life dramatically reduced by a COVID infection.
“It’s not over yet,” says Parraga, who has lived in long-term care for seven years and is worried for herself and her fellow residents that a return to a world with no public health precautions could spell disaster. “We shouldn’t be arguing the point.”
Parraga has avoided a COVID infection. She’s worn a mask, kept six feet away from others and been vaccinated. She spent much of the worst of the pandemic isolating in her room, a terribly difficult strategy to be sure, but she’s stayed safe. It’s a situation she said she doesn’t want to return to should another wave arrive in Ontario this fall.
“It’s very uncomfortable because I’m a fun-loving person and that doesn’t make me feel as if I’m contributing to anything,” says Parraga, currently president of Kensington Gardens’ residents council. She says she believes politicians are pushing the notion that the pandemic is over to stave off economic hardship.
“I’m not a politician but I think the politicians are terribly worried about this. That’s why they’re proposing this pandemic freedom.”
Aravind Joseph, community worker
Aravind Joseph would like the general public to know that anything that makes the pandemic last longer makes his already vulnerable and disadvantaged clients even more isolated.
As lead for personal support services at St. James Town Community Corner, which serves thousands of people in one of the most ethnically diverse neighbourhoods in Toronto, Joseph has seen first hand the physical, psychological and economic tolls the pandemic had taken on some of the city’s poorest people.
“We have a lot of people with mental health problems, we have a lot of seniors, we have people facing a lot of isolation,” he explains. “A good majority of the folks in St. James Town were already isolated prior to the pandemic. The pandemic has pushed it to the next level.”
Just one of the Community Corner’s services that had to be suspended because of the pandemic was the seniors program every Wednesday and Thursday that provided an opportunity for older residents to get together, play games and have lunch. The program has resumed but only for five or six seniors at a time, whereas pre-pandemic it could accommodate as many as 40.
Similarly, meals could no longer be served communally. As a result, the Community Corner was forced to deliver some 13,000 meals over a period of about seven months, mostly to vulnerable seniors.
“It just aggravated their isolation and that basically aggravates their mental health situation as well,” Joseph laments. Now imagine what happens when his clients get COVID, he says.
“They’re going to be isolated for another week or two and the timeframe, though short, is very important because this might be the time when they actually form connections” with others in the neighbourhood, he says, adding that his can be particularly hard for new immigrants who don’t know anyone.
“For most people who are financially well off, have connections, have family to fall back on, it doesn’t seem like a major thing. We are just basically deprived of some of our luxuries. We probably can’t go out partying, we can’t go on a vacation,” says Joseph. “But then there are people … they’re already isolated in a way where we don’t see them on a daily basis. Most of them are stuck in their own homes. We don’t even think about them. To even make a difference, we should know that these people exist.”
Enzo Risi, organ transplant patient
For more than two years, Enzo Risi managed to dodge COVID-19.
He diligently wore masks, avoided crowded spaces and often only met friends and family outdoors.
When his doctors advised it, Risi would get another vaccine. The 71-year-old has had five. He also rushed to get the COVID prevention drug Evusheld after it was approved last spring to ensure his body had antibodies to fight the virus.
Risi was right to be careful. As an organ transplant recipient, he’s among those at highest risk of getting severely sick from COVID. The anti-rejection drugs he must take after receiving a new kidney five years ago — a donation from his wife — suppress his immune system, making him especially vulnerable to infections.
Despite his caution, the Richmond Hill resident tested positive in June, shortly after the province’s remaining mask mandates expired June 11.
“I don’t know where, I don’t know how; it didn’t come from my family. And I always wear my mask everywhere.”
Risi quickly received an antiviral to help him fight the infection. His team at St. Michael’s Hospital’s Transplant Program has rallied around him and other transplant patients to make sure they are protected as possible. Before vaccines, about one in five of St. Mike’s kidney transplant patients who caught COVID died.
“It’s really hard to tell a transplant patient they have to live with the virus, because they just can’t,” Dr. Darren Yuen, a transplant nephrologist at the hospital, told the Star in May.
While he didn’t need hospital care, Risi says COVID hit him hard and the after-effects — fatigue, brain fog, chest pain and shortness of breath — have lingered.
“It was terrible, it’s still terrible. I can’t have a deep breath because it’s painful.”
The recent talk of the pandemic being over has him worried. For himself because he doesn’t want to risk another infection, and for others who are vulnerable, including transplant patients, the immunocompromised and the elderly.
“I don’t think it’s time for us to stop being cautious,” he says. “I don’t want nobody feeling the way I’m feeling.”
Carly Rebelo, manager of infection prevention and control at UHN
Unless you work in a hospital.
The setting where Carly Rebelo, manager of infection prevention and control at University Health Network, works is like a different world.
While much of society seems to have moved on from COVID, it remains a threat for hospital staff and patients.
“We’re still very much dealing with COVID within the hospital system and managing outbreaks and trying to balance COVID within the hospital,” says Rebelo, adding that the last two years’ legacy of surgical backlogs, surging volumes in the emergency department and human resource shortages has only added to the challenge facing her team. “It seems exciting that COVID numbers are decreasing. But we still have this lasting effect of what the past two years has done, right? And I’m not sure everybody really realizes that.”
While the hospital is dealing with fewer COVID outbreaks than at the peak, she notes they still occur and require the same diligent and immediate response.
Complicating things is the anticipated surge of both COVID and influenza cases this fall.
“That makes me a bit nervous,” says Rebelo, whose main role is to try to prevent transmission of communicable diseases to patients and staff. “I think we’re going to be quite busy. And you know, again, at the same time, trying to balance that with surging emergency departments.”
She notes that things outside the hospital’s doors may have changed, but precautions will remain inside. That means continued universal masking mandates, testing of patients and more stringent return-to-work policies — measures Rebelo expects to see at other hospitals, too.
“We do care for the most vulnerable … we have our transplant population, the oncology population,” she says.
As for any notion that the pandemic is officially “over,” that’s simply not the case, says Rebelo.
“It doesn’t mean that COVID is gone, that it’s no longer a threat.”
Megan Ogilvie is a Toronto-based health reporter for the Star. Follow her on Twitter: @megan_ogilvie
Kenyon Wallace is a Toronto-based investigative reporter for the Star. Follow him on Twitter: @KenyonWallace or reach him via email: email@example.com