Redefining normal

People...we’re all stuck at home. Well, unless our job is somehow tied to society’s ability to function, in which case we’re probably in the 12th hour of our underpaid work shift. For much of the population, the situation we’re now in is so far from normal that it’s deeply, fundamentally distressing. Being unable to leave our homes, able only to see our family members and loved ones over video and phone calls, some of us starved of human contact - this isn’t a great situation.

Some people were more prepared than others though. In fact, for some people, the developments COVID brought have been a vast improvement on their day to day living situations. Because for some people, being isolated, unable to leave home, and having reduced access to the world at large IS normal. And suddenly finding that everyone else is willing to accommodate these circumstances is a welcome change. Because it turns out, living in a pandemic is almost exactly what it’s like to live with chronic illness.

In the course of this plague I’ve found myself talking to friends who have been diagnosed with a variety of different chronic illness (to be clear, I was talking to them before the pandemic as well). But in recent conversations, I noticed a trend emerging. My fellow chronic illness comrades were much better equipped, in many ways, to see the benefits this situation has delivered.

A friend with a compromised immune system pointed out that she hasn’t been able to casually leave her house since her diagnosis. The increased availability of delivery services has been a game changer for her.

A friend with chronic fatigue pointed out that they no longer had FOMO from all the amazing events that were going on, that they knew they wouldn’t be able to attend.

A friend with unstable mental health said that having the ability to work from home meant that he could hide his more intense breakdowns from his colleagues, while still getting his work done - his boss is suddenly delighted with his performance.

For people with chronic illness, the pandemic has brought accommodations that we would never have dreamt of.

Now, clearly, a global pandemic is not a good thing. People are dying from this disease, and those that don’t die from it are facing serious long term health consequences. Nothing about COVID itself is a good thing. What has been good though, is some of the ways in which the world has adapted. As someone with chronic mental illness, I found myself hoping, in the first 8 weeks of lockdown, that everything wouldn’t go back to normal straight away. Turns out that was a complete monkey’s paw wish, since Melbourne is currently about as far from normal as it has ever been. But my hope was less about lockdowns and more about the sudden insight, and hopefully empathy, that people might have for those of us whose lives more closely resemble lockdown life than they do pre-pandemic life.

Life with chronic illness is kind of like having social hypothermia. If you get lost in the snow, and your body starts freaking out about how cold it is, the first thing it does is to draw warmth away from your extremities in order to protect your vital organs. Basically your body knows you can live without toes, fingers, or even entire limbs. It also knows you can’t live without your organs.

When you have chronic illness, you have things you know have to get done for you to survive. Things like maintaining an income, finding food and water, keeping the power and internet connected. But by the time you’re done keeping those vital organs warm, you realise too late that there’s not enough warmth left for things like catching up with friends, going out to see a show, or playing a sport - the extremities that you can physically live without, but that none of us would volunteer to give up if we had a choice.

During the pre-pandemic, not being able to attend social gatherings meant going without. It meant you didn’t get to see those people. But, interestingly, when the first lockdowns started, healthy people began making the effort to communicate in different ways. All of a sudden a lot of people with chronic illness had busier social lives than ever before. Because suddenly everyone was forced into a situation that actually accommodated the restrictions in their life.

The number of times I’ve been looking forward to a party, only to find that the night of the event rolls around and I’m sidelined by a breakdown. On those nights I would have to call or message the host, apologise profusely (often feel obliged to lie about the reason why I couldn’t make it) and then spend the rest of the night thinking about what a great time everyone else was having while I slowly drove myself further into insanity by listing my many shortcomings.

Not with lockdown though! With lockdown, none of those events are happening. Instead, people are inviting me to video chats, where I don’t have to wear pants, where I can hide the state of my home with a backdrop, and where I can turn my video off if I need to suddenly start crying.

Socialising went from a 9/10 effort to like a 3/10 effort.

Socialising has become so much more achievable that online dating is almost worth doing again. Everyone is taking it slow, actually spending time getting to know each other and letting genuine connections develop, because they literally have no choice. The people who are shit at conversation can no longer rely on washboard abs to get by. It’s a utopia for someone who loves the ‘talking to new people’ part of dating but is terrified of the ‘meeting up with strangers to see if they want to fuck me’ part of dating.

Incidentally, chronic mental illness also does a pretty remarkable job of preparing you for lockdown life. Watching neurotypical people describe the unique hellscape that is their mental state right now is like listening to my old diary entries being read out by a new narrator. Everything they’re saying is shit I know intimately well. Because I’ve lived it my whole life. But suddenly there’s a million and one articles reminding everyone that it’s totally okay and normal to feel the way they’re feeling. If you can’t concentrate, feel sad for no reason, want to scream at the sky and have gained 100 pounds...that’s okay. That’s normal. Don’t panic. And I’d be lying if there wasn’t a small part of me that wanted to gleefully rasp to all the otherwise healthy people “Welcome to the shitshow buddy, clearly you’re new around here.”

Despite being better prepared for lockdown than the average bear, the pandemic situation has definitely brought new and unique challenges in the mental health department. Mostly in the form of constant empathy overwhelm. The individual suffering of every worker and business owner in a ‘non-essential’ industry who has lost everything almost overnight - it’s beyond devastating. All those places and people that worked so hard to bring us joy and to make our lives less miserable, from arts and culture to hospitality and travel, to sex workers and tattoo artists. They are the people, places and businesses that helped make life worth living. And now they’re suffering the most. Every time I open the internet I see news stories documenting the unseen impact the pandemic is having. And that shit leaves me unable to get out of bed some days. Because I’m used to the lockdown life, and missing people, and not being able to go outside for days and weeks at a time. But human suffering is not something you ever get used to. It will kneecap you every single time.

My life has changed very little since the pandemic. Even when my city briefly came out of lockdown for a few weeks, I struggled to motivate myself to change anything, to leave the house, to see friends. Because lockdown life is my normal, and has been for years. But the state of the world right now is definitely not my normal. What’s going on globally undermines the few benefits that lockdown has brought to my life. Watching what is unfolding in America, in China, in Belarus, in Hong Kong, in Russia, reading about the conspiracy theories, the human rights violations, the protests of people whose leaders refuse to listen...and then watching the climate crisis escalate globally; it leaves me unable to breathe. It makes me feel like I’m watching the end of modern humanity, and I’m filled with a crippling existential ennui.

I don’t know where the world is going to be when this pandemic ends. But I do know that we will measure history differently from this point on.

I know that future generations will look at history as pre and post pandemic. And I want to believe, desperately, that it will be an age of compassion and enlightenment. I want to believe that it will be a turning point for humanity when we suddenly understood what it was to live another person’s life.

When we prioritised accessibility in a way we’d never done before, because we suddenly understood its importance.

When we reconsidered the systems and industries that rely on human confinement and isolation to function, because we understand the unique cruelty that is to endure.

When we renewed funding to the arts with more passion and purpose than ever before, because we understood that without them we would have gone insane in isolation.

When we increased funding to mental healthcare, because we suddenly understood the level of debilitation mental illness could cause.

When we renewed our faith in the sciences, because we saw what it could have prevented and what it could cure.

And we saw the importance of having a globally united front against a threat to our existence, because we saw how many died needlessly when we weren’t united.

But most days, I have a sinking feeling that it won’t be a new era of humanity. Most days I worry that it will mark the beginning of the end.

Because everything changed, but we just went back to ‘normal’.

That is all.

You may go now.