Everything is connected, I say, in socially distant solitude in one of Australia’s most populous cities.
Our lives touch others, I continue, not having hugged friends or family for months, not having sat in an office or a restaurant since March, unable to remember the last time I shook hands or brushed carelessly against a stranger.
The myth of the individual is broken, I once thought – but it was in 2015, when my body was filled with cancer that destroyed my feelings of control. I think it again now.
Illness is the iconoclast of comfortable mythologies. The ways in which we were always powerless become evident, the illusions of individualism are lost.
In 2015, everything fell apart.
In 2020, everything is connected.
I’m sorry, it’s cancer
It’s never cancer, until it is. In 2015, I felt raised lumps against my collarbone and woke from stinking night-sweats, ever-weaker, but thought it must be a cold. Isn’t it funny, I said, How every symptom you Google always says ‘Cancer!’
In the early days of COVID-19, there were signs and mutterings, symptoms and niggling concerns. But the diagnosis was impossible, surely. No pandemic was declared, and besides, we are safe and splendidly isolated.
It’s February, and things like that just don’t happen here, to us. It’s March, and it can’t be that bad, until it is.
From her lockdown in North Yorkshire, Sophie (Ewings Sarcoma, 2014-2015) sees the parallels between COVID-19 and the prelude to cancer. ‘You get all your tests hoping it’s going to be the lesser of whatever options they gave you,’ she says. ‘Finally it’s like, no sorry, here are the cancer cells growing – like the rising numbers of people dying of corona – and trying to figure out what to do.’
On March 12, the World Health Organisation issues a global diagnosis of pandemic. It’s happening everywhere at once.
Scott Berinato’s article on the individual emotional response to the impact of COVID-19 – ‘That Discomfort You’re Feeling is Grief’ – explores feelings familiar to cancer survivors, but still raw and new for others. All the world was one cancerous body, and we were ill and grieving in ways we couldn’t grasp. I read Berinato’s article and wrote to a friend about The Crying Room.
When they tell you that you have cancer, they take you to The Crying Room. They sit you down in all the pastel colours with a box of tissues. The nurse smiles. The doctor pulls out papers, shows you numbers. Dates. Survival rates. Names of mystery chemicals. She circles and underlines. She talks quietly about the prognosis.
Everything is different now. In the Crying Room, you are suddenly presented with the New Normal. There are changes and actions and unpleasant timelines, and you are in a completely unknown territory.
It’s hardly begun, but it’s that cool rush of trepidation and helplessness that blows through your chest and your limbs because everything else before is finished now. Some things might seem the same, but life has changed forever in ways you don’t yet understand. There is no going back.
We’re all in The Crying Room now. Together. You don’t have to cry in the Crying Room. You can, but you might just sigh, and say, ‘Well. What do we do? When do we start?’ but you can’t yet imagine the ‘Where will it end’ part, and in a way that’s not really the most important thing. At some point you all get up and leave the Crying Room, and you just keep walking.
We’re all there now, and you can move forward and be happy in unexpected ways in this strange new state of being. It’s cancer. It will take time away from you, but you can still be ok. You don’t ignore it. You don’t deny or pretend. You just do the thing right now and keep doing it until this stops. That’s not as scary as it seems.
Pause. Breathe. Pivot.
The new normal
The pivot was a quick scramble as the ground fell away and we leapt back, locked down, swiftly finding new ways to be. ‘Pivot’ defines 2020. We are adjusting through change and discomfort.
Andy (testicular cancer, 2018-2019) was diagnosed the month after his grandfather died of cancer, also following a year of family health crises, a new baby and a house fire. He knows about the pivot.
‘I could feel my wife Gina being scared by this surprise, and I felt more numb and surreal,’ Andy says. ‘But most of all, I had this feeling that I feel my grandfather and Dad instilled in me – okay, so what’s next here. Let’s get going and get through this.’
The ‘new normal’ is a phrase shared between cancer and COVID-19. With cancer, your world collapses, and you surprise yourself with how easily you adapt to an alien way of being: life scheduled around poison and radiation, constant needles, germ phobia and planned periods of sickness. For some, cancer has made this isolation easier. Wash your hands. Cover your face. Stay inside.
Hygiene anxiety is familiar for Andy and Gina, isolated in Seattle with their young daughter Zoe. They could revert to the old behaviours: staying out of crowds, wearing a mask, monitoring food safety and minimising contact with potentially ill people.
‘I may have been more concerned during the early stages,’ Andy says. ‘There was so much we didn’t know. Also, I’d suddenly become a high risk patient in a covid world.’
Some aspects were more positive in this particular isolation: they’ve both enjoyed more time together as a family, without illness or the interruption of everyday life. In other ways, it has been more difficult.
‘Andy had to withdraw more and we couldn’t let many people into our house during chemotherapy,’ Gina says. ‘But I felt free to go anywhere with Zoe, and I think that is a major difference. Our families live far away and we relied on school and babysitters. I actually felt I had quite a bit of support during the cancer journey, and now we don’t. And I worry about family and friends.’
Andy points out other differences: with cancer, we are alone, while COVID-19 is affecting everyone.
‘On the one hand, I should say that I feel they’re completely different situations,’ Andy says. ‘You have the certainty of having cancer. And the severity if you don’t treat it, then you are likely to get worse and die. I felt more alone. There was support, but in the end, it was simply my body. Through COVID though, we haven’t had any COVID-related health concerns, and we are in a similar situation as most of the rest of the world.’
The experience of pandemic is not universal, but it has touched us all. Even alone, enduring stolen time and bespoke, unsettling ‘iso-dreams’, we’ve been connected – although not all experiences are equal. Isolation is different for those with housing, financial security and loving families. The same could be said of any chronic illness. We don’t all face the beast armed with the same weapons.
Psychologically, surviving cancer demands that we lean into the terrors. The worst-case scenario that the treatment will fail. Relinquishing power to a process of slow sickening, in the hope of survival. The anxiety of uncomfortable truths and revelations about our vulnerability.
There is an element of body horror to a pandemic: The Thing, Invasion of the Body Snatchers, the victim in a zombie film who hides the bite. We are at the mercy of forces we can neither see nor individually control, and we can carry COVID-19 as an asymptomatic dark passenger without even knowing. Illness invades, or, like cancer, grows from a glitch inside. COVID-19 is a cellular monstrosity haunting our cities and bodies, Grendel attacking the hall every night. We are not under our control, and this wary embodiment destabilises our ordered sense of a whole, unified self.
We are exposed. We are vulnerable. Yet we are not alone.
It is the end of the world we knew. Just as cancer presents a schism in personal timelines, a radical before-and-after, we exist inescapably in a timeline where this pandemic is taking place. Even as governments push to return to business as usual, there is no going back. The past is a foreign country, its borders closed. We can only move forward.
2020 was the year we saw – if we ever needed to – how we are all connected, how our survival is linked to every part of the global body.
Individualism is a fairy-tale. We are communities within a global community – we witness devastating pandemic effects because our lives touch others.
In January, our country burned, and the winds blew the ash of forests and bodies over the water to shroud the towns of New Zealand, to touch the coast of South America.
In China, one city became sick. Then everything was sick.
The illusion of control is broken. Splendid isolation is a myth.
We have seen how we are weak, how little impact individual, everyday actions affect something like climate change: the world was in lockdown, flights stopped, the majority of people stood still and consumed less and lived the smallest lives they could in their own environment, yet not enough to lower carbon emissions to safe levels. Our changes must be massive and systemic.
And now we know we can change, swiftly and dramatically, for our survival. Quick mobilisation and a unified communal mindset – not perfect, but perhaps stronger than we might have expected – prevented untold suffering in Australia. We found creative solutions, shifted to new ways of working and serving communities. This accidental experiment shows there is the capability to ‘pivot’ for a better world.
We learned we can afford to take care of each other: that this is imperative to our resilience in catastrophe. The truth of our communal interdependence is seen in the failures of America: that a country is only as healthy as its sickest people. The illness ran rampant there, like a bushfire tearing through Australia in the longer, hotter summers of a ruined climate.
There is much to learn from a mortal crisis. For all the fear and sorrow, it gives us a unique opportunity – if we take it. Although the forced introspection of both cancer and COVID-19 allowed Andy to re-evaluate his life and the world he wanted to give his daughter, he is cautious in predicting lasting changes here.
‘There will be short-term impact for sure,’ he says, ‘But there’s just too much inertia back to baseline experiences. So we’re not going to see the full impact of this for a much longer term. It’s the classic statement of overestimating the next two years, but underestimating the next ten years.’
Maybe he’s right. Optimistically, I hoped distance working would improve accessibility to employment for many people: those with disabilities, those in remote communities, parents working from home. But although Jack Dorsey boldly announced his Twitter staff can continue working remotely, and New Zealand is considering a four-day working week, there is little sign of wider change here. As roles are advertised again with ‘flexible working arrangements’, we find they still expect office attendance, even when these tasks have been performed remotely. Many people will continue to be locked out and isolated, even after COVID-19. The old normal.
At a systemic level, we failed to expand our kindness – but we’re going to need it.
There will be aftershocks. The wounds of illness are not only physical. Collective trauma is unpredictable. The Australian Government announced increased mental health funding in the pandemic response plan. Even they can’t deny this will have far-reaching impacts beyond the economy. A destabilising exposure to mortality can damage and remake you in uncomfortable new shapes.
And as every cancer survivor knows, there is always the spectre of relapse. Sophie points out that even in ‘remission’, there’s no certainty that illness won’t return, and it’s the same with coronavirus.
‘People are not quite there in understanding how COVID-19 is not going to go away, either,’ she says. ‘You can bloody hope it won’t come back, but there’s always that chance.’
There is no cure for cancer. There is no vaccine for COVID-19, and there may never be. As we push further into the wild places of the world in our constant expansion, consumption and destruction, we will encounter more.
When governments are feverishly pushing for a return to normal, for us to continue careening down the path to our destruction, will we let this moment pass without change? Or can we push against inertia and systemic railroading to emerge from a nightmare with the dream of something better?
Because this isn’t the end. Welcome to your cancer journey.
Image: Dean Hochman