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‘Exhausting and Heartbreaking.’ The Other Side of Eased COVID Measures

For those at risk, the end of masks and vaccine passports means a life of isolation and fear.

Moira Wyton 3 May 2022TheTyee.ca

Moira Wyton is The Tyee’s health reporter. Follow her @moirawyton or reach her here. This reporting beat is made possible by the Local Journalism Initiative.

“Since protections lifted, I don't leave the house,” says Jaigris Hodson.

Hodson is being treated for Stage 3 breast cancer. Chemotherapy has meant COVID-19 could make her very sick — or kill her. For Hodson, and many other vulnerable British Columbians, the end of COVID mandates like masking and the Vaccine Card program have meant increased risk and lost freedom.

Provincial health officer Dr. Bonnie Henry has urged people to continue wearing masks and to assess their own risk in their daily activities.

But many high-risk and immunocompromised people don’t feel they can assess their risk with any certainty — especially as the province has dramatically reduced the information it is providing on cases and hospitalizations as the province’s sixth wave of COVID-19 sweeps through the population.

For some, that has meant avoiding necessary health-care appointments, keeping kids home from school or simply staying home.

The Tyee asked high-risk people to tell us how they’re navigating the pandemic with fewer protections than ever. We heard from dozens. Here are 12 of their responses. The interviews have been lightly edited for length and clarity.

Candace Latham, Surrey

We are a family with immunocompromised members who have been impacted by the relaxed restrictions, particularly around school and even family physician access. Our family, particularly our son in middle school, was better protected by mandatory masking. And now, with the relaxed protections, a child is expected to manage their own risk in the classroom. And that is by way of their own masking. So you are entrusting an immunocompromised child to properly mask and be aware of their personal risks in their environment and manage that. And with that comes incredible anxiety for the students. And educators are fully aware that an anxious child is not a learning child. My child is unable to “move on” like their non-medically disabled classmates.

When the pandemic began two years ago, when people were locked down, that's really where you've now put back the medically vulnerable — to two years back while everybody's going forward. The medically vulnerable have had to take steps backwards to protect themselves.

For my family, the ability to determine community transmission and levels through testing and through reliable data disappeared in the sixth wave. We actually removed our child from in-class learning, especially after one suggestion was made that perhaps the child could sit alone by themselves in the classroom. That to me is more harmful than everyone masking. It's not inclusive in any way.

You're just leaving families to decide if the risk of in-class learning is worth taking or if protection from longer-term disease is more important?

These kids are aware of their disabilities, they live with an immune deficiency every day. So the choice that you are having families make is, 'Do I choose education over health?' That is a really horrible spot as a family and as parents to be in to have to make those decisions, while the rest of the world goes forward.

Paula Ashby, Creston

My husband and I are retired and in our late 60s. He has chronic obstructive pulmonary disease and is at high risk of death or long-term damage from a COVID infection. My situation is not quite as dire. I am only at high risk during allergy season, which is now.

We follow all the guidelines: fully vaxed, wearing N95 masks when we have to go out, social distancing and other protective practices. Mainly, we simply do not go out other than essential trips to the grocery or hardware store. Now that the weather is warmer, walks in the park are a good way to get out and maybe socialize a little. No restaurant meals, shows or community events and we really miss it.

Without accurate and current data, it is impossible to do a risk assessment to determine the safety of attending an event so we simply do not attend.

Jason Miller, Penticton

There's currently three generations living in the house. My parents, my wife and I, and then of course, my 24-year-old son Avery who had to move back home when he was diagnosed with Hodgkin's lymphoma in 2020, right before COVID-19.

His risks couldn't be higher. To get his stem cell transplant in January, they destroyed his immune system. And then the new stem cells provide a new immune system. So he's basically at zero again. They risked giving him another COVID-19 vaccine after 100 days had passed since the transplant because the virus is everywhere. And again once he's healthy enough, he'll need to get all of his COVID-19 shots and other shots from childhood redone. He's literally sort of at a fresh start in terms of immune system, and so maximum high risk.

Before his transplant, we were still cautious. But we had lots of local data. We would look and see, “OK, how many cases are there in Penticton?” And then you could decide if you're visiting somebody, if you'd visit outdoors, and if you'd wear a mask and that sort of thing.

Now we have variants that are spread so much more easily, and so much more virulent, and yet we've lessened the protections around stopping the spread. Recently, since the data stopped being published, the only thing that makes sense is to assume the maximum risk in your community. We've pretty much had to cut off all contact with people. I can't see saying to my son, “I'm sorry, we brought the illness home that killed you, but the movie theatre experience was just worth it.”

My son’s friends, they're all working jobs where there is maximum exposure, so he simply can't socialize with his friends.

For a lot of people, when you can't cope, the only sort of mechanism you have to protect yourself is to not look and to not think about it. But it's a luxury, because we can't do that. You’re trying to protect your son and your family and people are treating you like you're some sort of QAnon conspiracist. When we were in Vancouver, I had medical doctors telling me how to sneak N95s in past the front desk, because the front desk, they make everybody take their masks off and switch them for surgical masks. It's a bit surreal when the doctors at the hospital are telling you how you have to circumvent the rules that are there, that will put your son at risk.

My son had somewhere that he could go that he could isolate and be looked after. I know, other people his age without a sort of the family to rely on are just left adrift out in the world navigating COVID.

Britt Helm stands in the sun with a black cane in their right hand. They are wearing sunglasses and smiling.
‘I feel forgotten and like my life doesn’t matter as much as someone with good health,’ says Britt Helm. Photo submitted.

Britt Helm, Nanaimo

I am a 35-year-old patient being followed by a neurologist for multiple sclerosis. I also have other complex medical needs that mean my body has a harder time fighting off infection and is at risk for more severe COVID-19 illness. It means that I must stay vigilant like everyone else was back in March 2020, except I must still live like that today.

The pandemic has changed the way my doctors treat my medical conditions. Because of the pandemic my life has shifted to a mentality of protecting my health above all else. I must be vigilant. I generally only go out for doctors’ appointments and medical tests. My wife is wonderful and does the grocery shopping and more high-risk activities to help keep me safe and healthy.

With protections gone, I feel forgotten and like my life doesn’t matter as much as someone with good health. I still mask up everywhere I go, sanitize, space out my doctors’ appointments and limit social engagements.

Honestly, I don’t know another immunocompromised individual that feels seen or heard right now. I wish the government had been more thoughtful about the needs of patients of all ages with complex medical care needs when it made these decisions.

Shelley Shenton, Port Alberni

I have a primary immunodeficiency that affects antibody production. I don't have robust responses to vaccines, so it's really unknown how well-protected anybody like me actually is with a vaccine. That's why it was recommended for three doses as a primary series, and then I just got my fourth dose this morning.

Now that there aren’t masks on public transit, I mostly walk the 30 minutes to the hospital for my Intravenous Immunoglobulin treatments every four weeks, which is basically receiving other people's antibodies to help fight off infections. I wear the best masks I can get and afford, like KN95 and now some P100 masks. A doctor I connected with on Twitter recently sent me five in the mail from a hospital he works at in the North Shore. I couldn’t find them anywhere, and I paid for them, but it’s tricky because they’re expensive.

Within the last two years, I've had to go to the dentist four times. So going there, I’m going “OK, how long after getting the vaccine am I, how much am I protected, I'm not going to be wearing a mask.”

For my IVIG treatments, I sit in the room with other immunocompromised people in ambulatory care. One of the ones that was very concerning was an elderly woman who was there one day who was out of food at home, she didn't have access to an N95. How do people who are extremely clinically vulnerable, who don't have support, how are they supposed to navigate life now safely?

I have friends who started going back out to socials that I used to participate in weekly that are going, “Come out to Smitty’s, we're meeting on Friday.” I'm like, “No, I can't go sit in a restaurant without a mask.” My world is very small compared to what I used to be able to do.

Lyndsey Locke and family, Surrey

My partner Scott and I live with our 12-year-old daughter, Hayley. She was born at only 25 weeks and 5 days when she started her 93-day stay at the Royal Columbian neonatal intensive care unit. Hayley has asthma, chronic lung problems, chronic pneumonia, developmental co-ordination disorder and cerebral palsy. Hayley is susceptible to becoming very ill with respiratory viruses due to the extensive lung damage she has from being born so premature. The state of her lungs and overall immune system puts her at great risk for complications from COVID-19.

Being worried your child could get very sick and die is something I cannot describe. School is an essential place for her, and every child has a right to a safe learning environment. The dropping of protections like masks and vaccine cards puts us in a position where we have to limit where we go and what we do. Not having access to timely proper transmission numbers makes assessing risk all but impossible, it feels like we need to just stay home.

I eat lunch with Hayley either outside or in my car every day so she isn't unmasked in the classroom. We have kept her home numerous times while COVID cases and exposures were high last school year. This year we kept her home the first two weeks while class placement was sorted and again for two weeks after Christmas break. Unfortunately, because the Ministry of Education and the provincial health officer have done away with any sort of COVID notifications and transparency, we have no idea if and when there is COVID in the school.

It's unacceptable in my opinion that the kids like her are being further isolated because we cannot protect each other. It's exhausting and heartbreaking how forgotten we feel.

Keri Wehlander and Curtis Aguirre, Penticton

We are caretakers for our son, who is 24. He has a condition that is not well known called PANS, or autoimmune encephalitis. Even before the pandemic, we took precautions to try to limit his exposure to viruses. Once the pandemic began, we tried to read everything we could to educate ourselves regarding COVID-19.

Eventually, it felt like we had found ways to reduce the risk of exposure — especially through the use of high-quality masks and avoiding being indoors with a lot of people. Knowing that everyone else was masked helped us to feel like any public exposure risk was minimized.

Now feels like the worst period in the pandemic for us, because it feels like the government and society around us have determined that our son’s life doesn’t matter. I (Keri) was exposed to COVID through my work three weeks ago (I was masked), and that meant that I wore an N95 mask all the time at home, and slept at night in our camper, just to make sure that I could keep our family safe. Once 10 days had passed, and I had a negative rapid antigen test, I felt like I could stop these precautions.

Our son’s condition involves inflammation in the brain, and we are aware that those with long COVID can also suffer from inflammation in the brain. If this condition worsened for our son, I’m not sure that we would be able to care for him on our own. We struggle as it is.

We feel like we are now in The Hunger Games part of the pandemic. Those with authority to make decisions in terms of public health have basically said to those who are most vulnerable: “May the odds be ever in your favour!” — and they have turned away.

Jaigris Hodson looks at the camera while sitting in their car. Their hair is short and blonde, and they are wearing a leather jacket with embroidery on the front.
‘Since protections lifted, I don't leave the house,’ says Jaigris Hodson. Photo submitted.

Jaigris Hodson, Victoria

In July 2021, I was diagnosed with Stage 3 breast cancer. Chemotherapy has left me with a low white blood cell count and other comorbidities which mean that if I caught COVID-19, I would be at risk of very serious illness, hospitalization or even death.

Since protections lifted, I don't leave the house. I used to go to restaurants or a movie about once a week, and would go to my work as an associate professor at Royal Roads University, and of course do regular outings for shopping or other needs. But now I'm basically under house arrest, I can't go anywhere in public unless I'm outside and in a mask. I order everything I need to be delivered and I work completely from home.

It's been really isolating, and I feel so unsafe. We require people to be licensed to drive, we require people to wear seatbelts, we require people to stop at stop signs, and we do these things because these requirements keep us all safe. I'm having trouble understanding why mask requirements or other protections should be any different.

People say that as an immunocompromised person I'm responsible for keeping myself safe. But that's impossible for me to do on my own without help from others. I think it's cruel to ask a person with cancer to give up on seeing people, or to tell a person with cancer they can't go to a restaurant or even take the bus because you don't feel like wearing a mask that day. Are we really, as a culture, that uncaring? I have trouble wrapping my head around it.

I feel like our premier minimizes my health issues and my concerns every chance he gets. Public health is not acting on what is now clear scientific consensus about how COVID is spread, and organizations follow suit. I begged my work to reinstate a mask mandate like the University of British Columbia has, or at least allow professors the option of mandating masks in their classes, and I was shut down. I've been told I can just keep working from home. I'm glad they're flexible with me and how I work, but it's not like I want to work from home forever.

Jesse McKee, Vancouver

I have been living with COVID since New Year’s Day 2022. I work for a non-profit and have been able to maintain some work hours, but I am severely impacted by long COVID and at work less than half the time, from home. I can’t walk or stand for more than 10 minutes, I have extreme fatigue and my prior autoimmune condition has been flaring since my COVID infection, including new major cognitive and memory problems.

I’m highly vulnerable to reinfection from new variants, BA2 and the incoming BA2121, because I do not produce COVID antibodies from prior infection and vaccines are less effective for me. I can’t be seen by the long COVID clinic because I do not have a positive test. PCR tests for most were discontinued by the time I got COVID. Post-acute phase testing yields a negative result because it’s based on antibody reactivity and 35 per cent of people do not produce COVID antibodies. I’m not able to provide medical justifications to my employer. They have been compassionate so far, but this will wear thin.

These days, I don’t go out at all. I don’t see friends or family socially, and I get all essentials delivered to my door. I haven’t changed a lifestyle thing since February 2020. The bubble life continues.

I wear N95 masks entering and exiting my building in downtown Vancouver for fresh air. It’s an older seven-storey building from the 1950s with no mechanical ventilation and stagnant hallway and stairwell air. Only 10 per cent of people in the building are still masking in common spaces, which puts me at extreme risk.

This week the elevator in my building is broken. The part that needs replacing can’t be located at the moment. I will have to walk up seven flights of stairs to return home from doctor’s appointments, forced to use the stagnant stairwell air while struggling to breathe with an N95 on. I know I’ll need frequent breaks sitting on the floor to make it all the way back up to my place.

Angela, Burnaby

I have uncontrolled asthma due to a cannabis allergy, which already made being in public and at home a risk. But now I have to worry about catching COVID. I was hospitalized after my second vaccine because of cannabis exposure that caused anaphylaxis.

I just rent a room in someone’s basement, so I can’t use the kitchen, which is upstairs, because my landlords have guests over regularly. My landlord isn’t worried about COVID at all because the messaging from the government is that it is over. Last night she had guests over who had COVID in Korea about a month ago, and then one person had been partying with their friends here.

I work from home and I order groceries for delivery that don’t need anything other than a fridge, hot water, or microwave. But if I have any appointments I take Uber, and they no longer require masks for drivers or passengers.

The housing crisis makes it hard to find safe and healthy housing that is smoke-free and has no interaction with others. I can’t afford to move and rent is ridiculous. And I currently live in a house with non-smokers, same with my family’s house, but cannabis smoke is invasive and gets in easily even from long distances. If someone smokes down the street, you will smell it. I could probably afford to rent an apartment, it would be more than 50 per cent of my income, but all shared buildings have cannabis smoke.

Also people with shared lobbies and elevators are exposed to anti-maskers. And COVID, like smoke, is airborne and can migrate if the ventilation is connected together and they don’t have a good system for reducing shared air.

I’ve even looked into living in an RV outside of cities, but to rent a lot for a month is over $1,000, without including an RV, and the only one that banned cannabis is not month-to-month.

I couldn’t take public transit before the pandemic because of cannabis, and I can’t take it now because of COVID. But my only remaining means of transportation is now mask-free. The more the government hides and suppresses data, the more people behave like it’s safe to expose people and get sick regularly.

Jaclyn Ferreira, Vancouver

My three children and I all have a rare disease that causes premature deterioration of our lungs as well as liver damage. We have asthma, and in addition two of our children have ADHD, which carries a higher risk of contracting COVID, and possibly a higher risk of worse outcomes. One also has two additional rare diseases, is autistic and was premature. All of these things, especially for the last tiny human, means that our family is at higher risk, but no accommodations have been made at the school level for our children.

The only options given were punitive, and our middle child, the one with three rare diseases, has missed more than 126 days of school. Our medical health officer has told us we can't request that the education assistants who work with him mask, and, at the moment, there are no EAs available for him at the school anyway, to support him with his masking. He is an excellent masker, but needs support and encouragement.

Our children are paying for their health with their education, and I don't know how we come back from this. Not from a learning loss perspective, because that's arbitrary and subjective, but from a trust perspective. Every single person in the chain of command that has a responsibility to protect vulnerable families like ours has failed spectacularly.

Robert Billard, New Westminister

I’ve been under the care of a rheumatologist for five years because of acute rheumatoid arthritis in many large and small joints. I am on two very expensive biologic immunosuppressants. I bruise very easily, cuts take a long time to stop bleeding and to heal, I can’t seem to regulate my body temperature and I wake up with bad headaches most days. My doctors have been very clear that I need to avoid COVID “like the plague.”

My partner Trudi and I live in a three-bedroom townhouse with my 21-year-old son full time and my 17-year-old old son half time. We are both business owners. I take my temperature almost every day. I wear a mask all the time when I am out in public unless I am eating or singing. My family is also very careful when they are out. Trudi and I have learned how to spend a lot of time at home. We’ve started playing cards. I started a lot of personal projects like recording and releasing a chart-topping blues album!

My son recently tested positive, and he works in restaurants. He has isolated in his room and no one uses the bathroom we designated for him. A little bit later, Trudi texted me that she wasn’t feeling well and tested positive. We decided she would disinfect everything downstairs while I was out, and then isolate herself upstairs on the same floor as my son. I work at the table and sleep on the couch with the dog and cat. We each have our own washroom and we don’t see each other. I have been putting on a mask and putting food and supplies outside the bedroom door for her. It’s pretty nuts. I am also acutely aware that I have most likely already been exposed and all of this is probably moot, but as long as I am feeling fine, I’d rather take these steps. I have a family and staff I need to take care of.

I wish the provincial health officer had the authority to do what was needed and shut everything down a long time ago. Governments are trying to balance not having too many people die and not losing too many votes. Media has amplified the anti-vax crowd’s voice so that it seems larger than it is.

At the very least, they should have kept the vax passes and masks. Masks hurt no one and there are no valid exemptions to them. With over 83 per cent of the population having been vaccinated twice, the vax pass only upsets as a small part of the population and was only needed for non-essential destinations. It hurts no one. Not having either of these has the potential to hurt a lot of people.  [Tyee]

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