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'All I want to do right now is hide': What it's like living in deadly fear of coronavirus

Kirsty Johnston

Kirsty Johnston is an investigative reporter at the New Zealand Herald

For some, the biggest threat posed by coronavirus is the boredom of staying at home. But for the disabled, the sick, the elderly and the poor it raises a fear of something far worse. Kirsty Johnston talks to those most at risk from the current crisis.

When Madeline Fowler-Oates was 3 years old, her family nearly lost her. It wasn't the first time Maddie had been seriously ill - the Tauranga twin was born without a pituitary gland and at 3 weeks old caught a virus that left her with brain damage - but it was terrifying all the same.

At that moment, her mum, Nikki, wanted to pull Maddie out of daycare, to keep her bubbly, music-loving daughter at home, where she would be safe.

"I wanted to wrap her in cotton wool. But then I had to think, what's that going to do to her quality of life?" Nikki says. "And so I tried to be pragmatic because if I was to spend every day avoiding things that could hurt her I would put her in a bubble. But right now...it's hard."

Maddie loves any kind of music. She's non-verbal, but manages to communicate all the same. Photo / Supplied
Maddie loves any kind of music. She's non-verbal, but manages to communicate all the same. Photo / Supplied

As coronavirus bears down, children like Maddie - as well as the elderly, the disabled and the marginalised - are among those most at risk.

Because the 8-year-old's body doesn't produce enough steroids, it would struggle badly to fight off a virus. And so life right now - a life that is already filled with many more struggles than it should be - is extremely scary for everyone who loves her.

"It can get very overwhelming. I think a lot of people with six family members - we have five children - know inevitably they'll lose a loved one and things like this make you face it again and again. And that makes it hard to remain functional. All I want to do right now is to hide," Nikki says.

"But I'm trying to keep calm. I'm trying to keep myself from snowballing."

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Maddie's family is already accustomed to keeping her safe. The family gets flu vaccinations religiously. They're vigilant with hand-washing. They keep her home if there's widespread illness - like the measles epidemic last year.

"The best protection for Maddie is to try and keep a safety net around her," Nikki says. So they're prepared on that front (although an order of masks has already been turned down because there were none left).

But there are other anxieties. Maddie has carers that come to the home every day to help her get ready for school and for bed. Both she and her twin, Felix, go to respite care each fortnight. If they're suddenly isolated, those will have to stop.

"I know if we start thinking about isolating from school and social situations then I have to say what about therapists? And paediatric appointments? It's quite big," Nikki says.

And then there are even bigger things, like the carelessness of others. Not just their actions - refusing to self-isolate or to take care - but their words.

"That's the hardest, people saying it's not a big deal and only old people will die. They're so flippant. Or that we need a population reduction anyway. Um, that's eugenics," Nikki says.

Covid19.govt.nz: The Government's official Covid-19 advisory website

It's not the first time she's heard it - during the measles epidemic the rhetoric was the same - even after the devastating death toll in Samoa. But Nikki says it still hurts, and people should be less selfish.

"You don't know your health isn't perfect until you know. I assumed my child Madeline was a perfect, healthy baby, and then she got really sick and I never thought that would happen," she says. "You don't know. And that goes for everyone. This might be the thing that tips the scales into a crisis. So we have to care for each other."

Donald: 'If everyone thought they were patient zero it would stop'

It was just after Christmas when Donald Bell was diagnosed with oesophageal cancer.

He'd been unable to swallow properly for a month. Despite that, the 73-year-old had done all the cooking over the holidays. At the time, he thought preparing food and being unable to eat it was just about the worst.

"When cooking, I'd have to taste things and spit it out. That's the thing I really miss. Decent food."

But even still, he'd give quite a lot to be back in his kitchen in Whāngārei cooking and not eating, or pottering around his garden pulling up weeds. Instead, he's staying at the Cancer Society's Domain Lodge in Auckland, having chemotherapy and radiotherapy, and watching uneasily as the coronavirus chaos unfolds.

Donald Bell, 73, is being treated for oesophageal cancer in Auckland. His immunity is lowered by the chemo. Photo / Supplied
Donald Bell, 73, is being treated for oesophageal cancer in Auckland. His immunity is lowered by the chemo. Photo / Supplied

"The effect of the chemo is that it knocks your immune system about. The oncologist explained that my immune system will be susceptible to viruses," he says. "So I'm taking precautions - if I'm out and about I don't touch things like banisters. Crossing the road I don't touch the button, I use my elbow, and washing my hands."

He's hoping that other people will follow the advice to do the same, to help protect people like him.

"I think the thing is a lot of people think it won't affect them. If they're young and healthy they could pick it up and not show symptoms but pass it on to someone vulnerable - and that's where the problems start."

The retired IT technician says he's been amazed at how many people don't seem to be aware of basic hygiene - even in the hospital waiting room, where he's watched people coughing into the air without covering their mouths.

"That was disturbing," he says. "I'm not sure whether it's arrogance or ignorance. But I think people should pretend they're the carrier and they don't want to infect anyone else. If everyone thought they were patient zero it would stop."

To clear his head each day after going for radiotherapy, Donald takes a walk. He's also teaching himself fingerpicking on the guitar. Some days he feels better than others. And his wife comes to visit him when she can.

He's been at Domain Lodge for one week. He has another four to go.

"I'm a bit lonely but I'm okay. It's nice here. If I had to isolate for the rest of the time I could accept that. It's for the greater good," he says. "Although four weeks feels like a long time right now."

Heather: "As long as you've got an egg and bread and milk you've got a meal"

The first Heather Middleton noticed of the panic was when she went to do her usual supermarket shop on Thursday morning and there were no potatoes.

"I couldn't believe what was going on. There were so many people there and it was only 10.30 in the morning," Heather said. "It made me feel horrible."

Heather is a pensioner, who lives alone in Birkenhead, on Auckland's North Shore. Despite recent ill health - she's waiting for surgery - she still works in an op shop once a week, and goes to a knitting group and a garden group.

Like many older people, she's pragmatic about the arrival of Covid-19, while knowing it will have an impact. Many activities for retirees will be put on hold - as the elderly have weaker immune systems - including services provided by Age Concern such as coffee groups and home visits.

"I'd miss going out a lot - and the garden group. But I'm not worried about having to go into isolation, because I live alone and I've been in hospital and I've had bad health over the last 12 months, I'm used to being at home," she says.

"If I get it, I get it. I just hope I don't. But for me, there's no point worrying before - you worry about it then."

She's also not worried about food for herself.

"To me, as long as you've got an egg and bread and milk you've got a meal," she says. "I have things in the freezer I can thaw out. I could definitely survive for two weeks."

For Heather Middleton, 71, the isolation is less worrying than the panic-buying. Photo /Supplied
For Heather Middleton, 71, the isolation is less worrying than the panic-buying. Photo /Supplied

But what upset the 71-year-old was the panic she saw around her. Even coming from a large family, she can't understand why people think they need so much.

"In all my years, I've never seen anything like it. It's worse than Christmas. There's definitely panic in New Zealand and it's crazy," she says. "My advice is that people need to rise above it and not get in such a tizz about it."

"I just wanted to say to them all, with their trolleys full - leave enough for everybody else."

Heather said as she left the supermarket, she shared a knowing look with the staff on the till.

"They couldn't believe it either."

Etta, Erin and Stace: "I find some of the attitudes really troubling"

Here is a list of things to be grateful for if you're a wheelchair user in the age of coronavirus: Finally, automatic doors are having their day. Workplaces actually want you to work from home. They're actively having to invest in technology to make that happen. So are universities and schools. You have the disability community helping able-bodied people with access issues. And helping each other.

Here is a list of things that are a challenge for a wheelchair user in the age of coronavirus: Homecare. Public transport. Private transport. Going out for dinner. Going to events (although that's becoming less of a problem). Your own hygiene when there's no hand sanitiser. Your care worker's hygiene when there's no hand sanitiser. Equally sourcing a mask for your support worker when there are no masks. Supermarket delivery. Structural discrimination. Other discrimination. The judgment of others. The fear that comes with not feeling like a priority in the health system.

"How I'm feeling right now is that this is …. a real mix," says Erin Gough, 28. "Some of the innovations are great. I've been thinking one of the upsides is that some of these things might endure and people are more open-minded about access issues.

"But then also… I find some of the attitudes really troubling, about old people and the disabled. It's still talking about whose lives are more valued."

Stace Robertson, Etta Bollinger, and Erin Gough, at their Wellington flat with Wilson the cat. Photo / Supplied
Stace Robertson, Etta Bollinger, and Erin Gough, at their Wellington flat with Wilson the cat. Photo / Supplied

Erin and her flatmates, Etta Bollinger, 26, and Stace Robertson, 32, live in a flat in Wellington, with their cat Wilson, age unknown. All have mobility issues. Their house has been modified with ramps and an accessible bathroom for their chairs. Etta has a support worker that helps her in the mornings, but mainly the three help each other, with chores like shopping or cooking. They like drinking tea and talking. All three are creative - they write and make art (and in Erin's case, they tweet).

They are all feeling anxious about Covid-19. There are the small things - like the supermarket deliveries they rely on being booked out, and the larger things, like watching the situation overseas and worrying about what will happen here.

"It's kind of like, oh well, your life doesn't matter. Particularly seeing things in Italy where they're triaging people on perceived quality of life and you think, how are they going to look at us?" Stace says.

And because they're part of a community, they know anything they face challenges with, others will have it worse.

"We're all employed and have social networks," says Erin. "Not everyone does."

As the crisis deepens, they hope people will remember to look out for others less able than themselves, and that the health sector will too.

"It's not only about being kind, but it also needs to be about people's rights to health access," says Etta. "There needs to be resourcing on a practical level, and then we'd be better placed to deal with this."

Right now, they are proud of how the disability community is responding - sharing tips about how to work from home or about the best way to teleconference. "They're doing that even though they could say, no, look at how you've treated us," Erin says.

They hope the lessons learned during this time will last after the pandemic has gone.

"For me, this is an opportunity to reflect on our values as a country, " Erin says. "And an opportunity that could endure for a long time after this passes. It's up to us collectivity to make that happen. I would feel disheartened if access issues only peaked during this time and then we went back to not being a priority."

Kera: "The whole thing has made me pretty anxious"

Amid everything, one of the rituals Kera Sherwood-O'Regan will be saddest to give up during the coronavirus crisis is baking rēwana for her family and friends.

The Auckland business owner, who lives with the chronic pain and fatigue condition fibromyalgia, says sharing kai at this point is just too dangerous - particularly as her flatmates also have immunity issues.

"I've had to take really serious precautions - hand-washing after virtually every step, handling with paper towels, etc. - and probably will have to stop soon," Kera says. "It's a real shame."

Kera Sherwood-O'Regan runs a social impact agency in Auckland while living with fibromyalgia. Photo / Jason Boberg
Kera Sherwood-O'Regan runs a social impact agency in Auckland while living with fibromyalgia. Photo / Jason Boberg

For Kera, the risk the virus poses is multifaceted - to her health, to her income, and for her Māori whānau.

Her condition means she's more likely to get sick - she recently had pneumonia that developed into pleurisy and is yet to fully recover. She takes precautions - Kera is lucky to work from home, and with the fibromyalgia support groups she runs in her spare time, she's already switched to teleconferencing because it's too high risk to meet in person.

"It's quite hard, as a lot of our people are already quite socially isolated because it's hard to get out of the house anyway with their symptoms, so people looked forward to getting coffee and being social," she says.

"But at the end of the day we have to keep people well, and most people I know living with fibro are already social distancing a lot, if not virtually isolating voluntarily."

She's also stopped meeting friends in person, and cancelled a trip to Wellington and Te Waipounamu to see her family and attend the Māoriland Film Festival.

"It's too high risk for me to be flying, which is pretty upsetting."

That cancellation got her thinking about how Māori and more rural communities are also at higher risk from a pandemic.

"And it's even worse if you experience multiple marginalisations like being disabled and Māori, as we often have to rely on becoming self-employed or participants in the unstable gig economy," she says.

"I'm really privileged that if I was sick or my work dried up during the pandemic, I could move home (my Mum has even joked that I could live in their caravan to self-isolate), but a lot of whānau don't have the same resources.

"A lot of our people work frontline roles where they don't have the privilege of being able to work from home, or don't have good job security or paid leave options."

She said the difference between her situation and many others was highlighted on a recent supermarket trip, when her partner was walking around with a calculator trying to work out what they could afford, and others were loading their trolleys full.

"The whole thing has made me pretty anxious, as I've still not fully come right since my pneumonia," she says. "But I did manage to have a phone consult with my GP, which put me at ease. I've also been having more phone calls with friends and with my whānau, so that helps to not feel completely out of the loop."

She says to help marginalised workers, businesses needed to make workplaces as accessible as possible right now and make sure they carry those practices on into the future.

"I also really want to see a recognition that not everyone can work from home or has stable employment too, so I think people can help by encouraging businesses to implement good policies that keep their frontline workers safe and well paid."