The pandemic isn’t over

"I’ve never felt so lonely in my whole life"

When people ask me if I’ve had Covid 19 yet, and I say I haven’t, they often say “You’re lucky”. I know that when they say this, they mean no harm. It’s just a thing people say. But why does it make me feel so…frustrated? Is it just one more thing on a pile of things that make me feel like I’m living on another planet? A planet where Covid 19 is still terrifying for us?

I think the fact that we haven’t had Covid 19 yet comes down to two things:

Privilege - I work from home. And while I have lost so much work due to not being able to travel and not being able to do gigs - I have been able to get by with subscriptions from this newsletter. I have the privilege of being able to shelter when most people can’t. This isn’t a reality for most people.

Changing my whole fucking life to protect our child - This is the main one. Do I sound bitter? I guess I feel it some days. I’m the most extroverted extrovert and I want to be out in the world. Instead everything I do has to be so carefully measured - is this safe? Is this safe? Everything is a balance of - mental health vs possible Covid exposure vs need vs want. It. Is. Exhausting. And it impacts our ability to work, live…everything.

My husband has his breaks from work in the car. He masks all day. He never goes into the staff room. My medically fragile kid wears his mask all day and asks us repeatedly why he’s the only one who has to. We spend all of our time trying to make sure it’s the right thing to do by him - is it fair that he has to wear a mask? No.

But, this is why we have managed to avoid Covid 19. It’s not luck. It’s an effort. An exhausting effort. Every day. And sometimes when I see other people just living their lives and travelling and enjoying the world, I want to curl up into a ball and cry. And sometimes I do.

I want that. I want what she’s having….

But so much of parenting immune compromised, disabled, or medically fragile kids is being on the outside looking in. And every time I hear people say - I had it and had no symptoms…you may as well just get it. I think about how many asymptomatic people are out there not wearing masks. And I think about how my son had a cold that lasted two weeks and we were on standby in case we had to hospitalise him. And all we could think was: And the hospitals are full of Covid.

When his fever made him shake I felt like my world dropped out of my feet. I felt a rushing in my ears. I felt my vision blur. And all I could think was get it the fuck together. Now is not the time for a bloody panic attack. Because every time he’s sick I’m reminded of what’s at stake. I see a therapist each week and I’m on medication and I can pull myself together. All of this is just to say, some days it feels like the most exhausting fight. And I don’t want to fight anymore.

But there’s no giving up.

So here, I want to share what it looks like on the outside…What it looks like for those who are still in the pandemic. A reminder that the pandemic isn’t over. A reminder that we still need you, on our side.

Thank you to everyone who shared their stories with me. There were too many to include, but please know I am honoured to hold your stories.

Photo by John Cameron

I had my baby at 25 weeks, three years ago. He was on oxygen for nine months. This started with intubation, CPAP, high flow oxygen and low flow. When we brought him home from hospital he was still on oxygen and diagnosed with chronic lung disease.

In the first year of being home we had to call an ambulance over 20 times because he couldn’t breathe. The slightest illness would affect him, even just a nose sniffle would see him being admitted to the hospital. He once caught a cold and went blue in his car seat while I was driving. This was all pre-COVID.

When COVID got here we stopped being able to leave the house with him. I worked from home and we seriously considered my husband needing to quit work because if our son got COVID we feared he would die and I’d already watched him come close to many times. We lived in fear and still do everyday. - Chavvah

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My daughter has a serious congenital heart defect and was born at Starship. She had her first open-heart surgery three years ago. Her most recent hospital admission was when she was flown on a Life Flight to Starship in the middle of the Auckland lockdown. We spent weeks in a different city, away from our family and support systems, and it was unbelievably hard.

After so many hospital admissions, often far from home and family, I am an expert at putting on a brave face, pretending everything is going to be OK, talking her into medical procedures, and crying silently so she won’t hear me. It is a special kind of Hell that I wouldn’t wish on anyone.

Outwardly, she might appear fine, but she tires easily, and we are constantly alert for any warning signs. She can get really sick when she gets an infection and ends up in hospital, so we are super cautious with her.

When she and her brother go to school, they wear N95 masks all day. They are the only ones in their classes that wear a mask.

We have had conversations about why it is important to keep wearing a mask, even when their friends don’t. It is about keeping our special heart girl safe, their teachers and friends safe, and doing the right thing.

I know they find it hard, especially my daughter, as her condition means she gets extra attention from teachers and dispensations during school sports, and she already feels so different from her peers. Wearing a mask sets her apart in just one more way.

I cannot understand why others have discarded their masks so quickly. Do they not know that it provides a level of protection for them and the vulnerable people around them? - Bex

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My sister is vulnerable. She has multiple medical conditions. It has been really hard for her and my mum (who is her carer) to experience anti-vaccine and anti-mask attitudes and to be fearful of going out, being around the general public, worrying about getting Covid. - Mel

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Three of the teachers at my child’s kindergarten are immunocompromised and there is strict mask wearing and sanitising, and children are checked for illness. I am grateful as I'm medically fragile and disabled, and have two young children. I spent five weeks in the hospital with Covid 19. School isn't that strict but in my little community, most people are still masked and strict on it which is great. - Anna

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The pandemic has made my husband so much more aware of sociopathic corporate narratives - as a type 1 diabetic since the age of seven he feels that he is considered expendable...more so than any other time in his life - Angela

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I’m immune compromised and I guess medically fragile at the moment. I work from home. I don’t socialise with anyone. I take my kids to swimming lessons and wear a mask and I get snarky comments from other parents about how you don’t need masks at the pool. I take my eight month old immune compromised son to music class and we stay in a little corner 2m away from the other kids. And no one gives a shit because they’ve all had Covid or they don’t believe it’s that bad. Everyone else is back to normal and my husband is doing his best to avoid bringing bugs into the house and we just get ostracised for it. It’s sucks. We literally get teased about it by other adults. Since when was trying to protect vulnerable members of society something to be teased about? - Sarah

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I’m immune-compromised and I’ve never felt so lonely in my whole life. - Kate

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We’ve been waiting 16 months, six months at highest priority, for an assessment for housing modifications for a ramp and accessible bathroom. They say the delays are because of all the times they couldn’t visit because of Covid. - Jess

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My husband is immunocompromised. My kids are seven and three and we all wear masks everywhere. The exception is an empty playground. People tell us all the time, your kids don't need to. But who knows which one of us would bring Covid 19 home? My husband still has to go to work. He's in a well ventilated large space, and wears his mask, and tells people to wear theirs or he'll find another staff member. Most people are great and simply forget, it's in their pocket, but some people a total turds about it. - Rebecca

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Shit it’s awful when people gleefully inform us that we don’t have to wear masks anymore. Hey mate, we’re still over here trying to protect our kid and ourselves and living like total hermits while you all act like nothing’s happening. I can’t think about it too much as it makes me too sad and angry and overwhelmed about the future. - Esther

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For me, this pandemic has revealed the lack of empathy that has been simmering under the surface. How individualistic we have become maybe? But also, it’s made me realise how I will fight for my children first, no matter who I offend, or which friends fall away. - Nicole

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I have asthma and chronic lung disease. I mask up everywhere. We’ve asked our kids to continue wearing them at school to minimise risk for me. I pick up bugs so easily. We talk a lot about how it’s not just to look after ourselves, but to look after those around us who are immune compromised. I wish more people thought about others. - Natalie

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Our 11 year old isn’t medically fragile but he wears a mask every day by choice as he doesn’t want to get covid and he’s avoided it so far, he wants to protect his six month old brother, and he doesn’t want to pass it on to others accidentally if he’s asymptomatic. - Jess

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I’ve just been diagnosed with Grave’s Disease, an autoimmune condition affecting thyroid function. I’ve been really unwell the past couple of months and it’s been a scary time while people around me are getting Covid and going about their life as usual. I’ve had to leave my job and until I’m out of thyrotoxis it’s potentially really dangerous for me to get sick. I’m getting out of the worst of it now but if I get Covid it could really set me back in my recovery. I so appreciate my flatmates and my partner and friends for helping me do some fun activities in a low risk way. It’s really impacted my thinking and has been a very humbling experience. - Ruby

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I’m really fucking sick of people telling me that there's no point in trying not to get Covid now, or that it's not that bad if you do get it. People with health privilege just don't get what it's like to not be able to take that risk, to be not confident that your body will pull through when you need it to. They don't even have to get it - they just have to respect our assessment of the risk and our decisions around masking. For some reason that's too hard for some people. - Bronwyn

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I’m on chemotherapy. And we have a two-year-old who isn't eligible for vaccination. We are preparing for his return to school next term and I want him to wear a mask but my husband says it's important for him to fit in and not be bullied. He's seven. - Gem

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What’s it like? Exhausting, heartbreaking, terrifying. It’s bringing up every medical trauma I’ve ever had over and over because I’ve been battling for years and any illness can be nothing or something very serious.

People don’t get that and all they need do is wear a mask and we’re as good as we can be. I’m not unrealistic or asking the selfish to be sent into the ocean, but in my case a person died so I can be alive today and I’ll be fucked if some selfish prick puts me back on the pathway to death again and having to fight to be alive.

But please, go to your pubs and concerts, hang out with friends but do it safely and not at the expensive of those trying to just not die. - Ben