Am I the only one looking out the window?

The engines are on fire and the plane is going down. Why do I feel so lonely in noticing that?

This week, I made this post on Instagram about the seventy-seven people who were killed over the holiday period in Aotearoa, New Zealand. While we were with whānau sharing Xmas Day lunches or going to NYE parties with mates, seventy-seven loved ones died from Covid infections.

I can’t stop thinking about them. I can’t stop thinking about Covid. I don’t think I should.

I was reminded of this piece I wrote in June last year and never published, fearful of being ostracised further. But recently I’ve been trying to just share what I want online - so here it is.

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I had this unshakeable feeling last night.

With functional seizures, I get a warning from my brain that’s hard to describe but unmistakable - a feeling that the convulsions are imminent.

With chronic pain, it’s a little different. Ever since my surgery last year, my chronic pain has migrated to my hips. I feel this ache all the time, a deep-in-my-bones ache that doesn’t go away. It’s a nagging remnant of the pain that once overtook my entire body.

Last night I felt the familiar sting of the ache and the unshakeable feeling of the convulsions. I began my usual countermeasures, stretches, pain relief, and meditation. Still, as it turns out, the pain was something else entirely.

With my mental health, it’s a lot harder to discern when shit is about to hit the fan.

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I tried to keep it in, but every pill rose in my throat like bile. From the codeine to the loneliness, the jealousy and the rage. It spilled out; once I started, I couldn’t stop.

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The thing is, I wouldn’t even categorise it as jealousy, but I don’t have a better word for it. So, I’m jealous. I’m jealous of my peers, who’ve stuck it out this long and seem to be giving up.

They’re giving up the precautions they’ve clung to for so long, and it’s killing me slowly to watch. The people who held the Covid protocols close (remember those? from the olden days) are loosening their grip.

And I’m feeling the pressure too. I used to be able to rely on the fact that I had been in insurmountable pain for years, inebriated by ever-increasing opioids - a shell of my former self with a body that couldn’t cope. I had an excuse to be home alone. I couldn’t leave my bed so I couldn’t leave the house. It was easy to justify maintaining a bubble. It was easy to justify keeping myself safe, masked up when out, which was usually just at the hospital, but at home most of the time.

These days though, my chronic pain has dramatically decreased. I had a radical hysterectomy (uterus, cervix and both fallopian tubes removed, basically, everything) in September 2022. Surgical complications aside, my recovery has been relatively easy and breezy; aside from it taking twice as long to recover because of my history of severe endometriosis.

With the loss of such debilitating pain, I feel that ever-increasing pressure rising to take its place.

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I still haven’t seen the movie…

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The protections the government put in place are gone, some entirely like the mass PCR testing and some in all but name like masking. The community care that the policy-makers spent all of 2020 and most of 2021 nurturing has been shot dead by politicians. The government appears to have forsaken all the values they persuaded us to care about. The onus of caring about other people has been placed entirely on the individual.

And don’t get me wrong, I love the individual; I believe in the individual, in their capacity for love and kindness. I reckon the vast majority of what makes us human is that very compassion. And I don’t care how dopey that sounds.

Financial greed is where I think the finger should point. While governments revert to their capitalist ways and pretend Covid no longer threatens humanity, there is a lot that we could do. Sick leave, mandated masking, and proper equitable access to testing and treatment were and are still on the table. We’ve just been convinced it isn’t in our best interest.

As sick leave and remote work dry up, inflation booms, and that overused ‘cost of living’ skyrockets, I see more and more of us buying into that lie.

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Ignorance truly is bliss, but knowing the truth about Covid and pretending that it isn’t the reality requires a whole other proverb I don’t quite have the creative ability to craft.

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What I do have is my experience, what I’ve lived through, and this is it.

While scrambling to maintain a sense of meaning, a reason to complete the banal task of survival day in and day out, I’ve rediscovered the joy of crafts and art. I’ve always relied on writing to make sense of the world, but I’ve retreated since there is no sense to be found. Embroidery, crochet, painting, drawing, there’s been a few that have held my attention.

Embroidery 2022-2023

I noticed a twang in my wrist on the back of these pursuits last week. Being held back by something as mundane as wrist pain was infuriating. My doctor is booked weeks in advance, so I’ve had to ideate treating it without professional input. All signs indicate carpal tunnel syndrome, so I’ve had it braced for about a week now. I don’t have the words to describe how painful it is. It isn’t the usual physical pain I’m familiar with but a different beast altogether.

It feels like the earth has slipped out from under me. Endometriosis made my life and world much smaller, but I had managed to claw back some meaning, learned to craft, and fell back in love with making art. But my fucking frail body just decided it was too much. It’s a war, my ever-fraught relationship with my body, and it won this battle, suffice to say, with a gut punch that has winded me.

In the absence of things to focus on, I’ve had to find ways to pass the time, and unsurprisingly, that meant more time online. And online, I see my mates and acquaintances going out. I see them partying and going to zinefests and campaign events. I see them, and I’m, again, for lack of a prettier word, jealous.

People don’t seem to see the risk of Covid like I do. They don’t seem to think the cost is too high.

I don’t share all this to be self-righteous or sanctimonious, though I know it sounds it. I know how disinformation works. I know that it is much easier for the brain to reconcile cognitive dissonance than to acknowledge we are being collectively thrown under the bus. Like the trolley problem, but we’re all pretending the lever doesn’t even exist!?

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Half-empty shelves at the supermarket in the ‘Cold & Flu’ section of Countdown June 2023

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The straw that broke me was taking a loved one to Urgent Care over the long weekend. As I walked in, terrified of what the night had in store, I realised this was my first big Covid scare. We were the only ones wearing N95s. I could see only those god-awful sky-blue surgical masks. A handful had their masks in the impotent position, uselessly hanging off of their chins.

The flashy electronic hand-san machines were empty. Totally empty.

The triage nurse did a RAT and, within minutes, cheerfully declared we could rule out Covid. I bit my tongue so hard I tasted blood. I wanted to tell them that RATs are unreliable. I wanted to tell them that RATs can’t tell you that you don’t have Covid; they can only tell you that you do.

Instead, I asked for a PCR and was promptly notified they no longer do them. The message I got was that no one does them anymore. I saw red and was shaking with fury as they sent us right back to the waiting room filled with coughing, spluttering, sick people.

I wanted to leave. Get the fuck out of there. I had brought us here because we couldn’t manage the worsening symptoms at home. Why on earth wouldn’t they protect us? I felt my pride sting. I wouldn’t beg them to protect us.

I know the staff aren’t in charge, they don’t make the rules, and they certainly can’t change them. I know they’re overworked and underpaid.

I can’t understand why the government gave up on us.

I don’t understand how human beings could do that. I don’t see what they see, that financial greed is a good thing.

I know my friends and loved ones are doing their best. It’s hard out there. The pressure is immense, and if you have to drop precautions to earn enough to survive, to do it for the kaupapa, or to keep sane, I get it.

I have friends who are bullied by their bosses or contracts for taking precautions.

I have friends who just couldn’t take the anti-mandate harassment on top of all of the other harassment they face.

I get it; I truly do.

And yet, I’m still lonely here on what I know isn’t a high horse, but I feel like it is. I’m being made to feel like I need to ‘participate in society’ and forget about the personal cost.

Maybe it is because I’m overly sensitive. Or maybe it’s because I’m disabled and chronically ill already.

I know what it feels like to see not life ahead of you but barrier after barrier. I know what it’s like to be afraid of the medical system, be afraid of being hospitalised time and time again, be afraid of the doctors peering down at you and the nurses denying you pain relief.

I am used to doing everything I can to avoid the hospital. Why would I give that up for Covid? Why would I risk everything that comes with Covid? We know that Covid raises inflammatory markers. We know that endometriosis increases inflammatory markers. We are only just coming to grips with what happens post-viral infections like EBV - Glandular Fever and then ME/CFS. Everything I know about the healthcare system tells me it’ll be decades before the actual fallout from Covid becomes truly visible.

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I know that because of rampant and repetitive Covid infections, everyone I know will become disabled and chronically ill with whole-body diseases or conditions.

But I want to survive this, and I’ll do whatever it takes.

I’m sick enough as is.

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I’ll stay safe inside, but it does kinda feel like I’m at a party, and everyone else is having fun, making friends, and I’m just in a corner whacking my head against the wall. Life goes on, and so does the party. I just feel like I’m the odd one out. People are pointing and staring at the one weirdo with blood on their forehead.

I’m just lonely, ya know? Lonely on this high horse they’ve put me on.

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