The long twilight of long covid

Medicine is alarmingly unscientific sometimes. For a whole host of reasons, including privacy, politics, and arrogance, there is no systematic tracking of side effects of drugs, or reactions to different infections, or how effective various surgeries are as interventions for particular conditions, or anything at all, really. And nowhere has this been more apparent than in our collective response to long covid.

What is long covid? We have no idea, except that it could be a collection of any of over 50 different symptoms – quite possibly many, many more.

How long will it last? We have no idea, except that we define it officially, as still experiencing symptoms from 12 weeks post infection.

How many people have it? We have no idea, except that some estimates suggest as many as 30% of people with covid will experience long covid to some degree. It could be higher.

The numbers, at least, we could be tracking. In Australia, confirmed covid cases are largely recorded – originally, we had a record of who had tested positive on a pcr test, and now we are supposed to register a positive rat. Sure, lots of people who get positive rats probably don’t register them, and lots of people who have covid probably don’t bother to test.

Still, we have an unprecedentedly large cohort of people we know have had covid. Probably. (Rats and even PCRs can have false positives from time to time.) We could be following up with all of those people, or some representative sample of those people, or really anyone at all to find out how they are tracking with symptoms. But, although there is research into long covid, there doesn’t appear to be any systematic tracking & followup of people who have had covid. So we don’t know much at all.

The thing is, this is still a huge step forward over how much we know about existing post viral syndromes, which have been wreaking havoc among a small section of the population for decades – probably a lot more. Until long covid hit the global consciousness, Post Viral Fatigue, or Chronic Fatigue Syndrome, or Myalgic Encephalitis, or whatever you want to call it, was largely considered a myth. An excuse. Extreme hypochondria. Nothing real. Nothing worth taking seriously.

I had post viral syndrome in my early twenties, and I was gaslit by many in the medical profession, who seemed to think I was just trying to do too much, or a little anxious, and I should really accept the energy levels I had available to me. I spent years struggling with exhaustion, brain fog, aphasia (inability to find the right word), and frequent recurrent infections. I was horribly unwell, my lifestyle wildly compromised, largely unable to work, and told this was just my life now, and nothing to really worry about. I eventually found a supportive immunologist, but there was little he could do aside from acknowledge that I was genuinely unwell. That, in itself, was enormously reassuring, because even my parents, with their medical backgrounds, did not believe I was actually ill.

Eventually I clawed my way back to health. I learned a lot along the way, including the very tough lesson that trying even harder to get well could make me worse. I had to learn to rest, push myself a little, rest some more. Too much pushing could send me backwards, but so could too much rest. Those few times I summoned the strength to get out and socialise, I could appear almost normal while I was out, but it was painfully easy to overdo things, and I’d wind up paying the price for days, if not weeks.

There’s an art of knowing when, never try to guess.

Toast until it smokes and then

twenty seconds less.

Piet Hein, Grooks II

But there was no guidebook. No rules. No clear, evidence based approach to getting better. I was determined, but I was also lucky. Some people never got better. I don’t think I ever got all of my energy back, but I did pretty well. I got fit. I had kids. I had a busy working life.

Enter the pandemic, and the one thing that we do know about long covid, which is that people who have had anything like it before are very likely to have it again, probably worse.

In May, after over two years of extreme caution, I got covid. Last Friday my post covid fatigue officially became long covid (because it’s been more than 12 weeks and I still have symptoms). I have a little aphasia, but not as much as last time. I get brain fog, but this one is different – it feels more like a weird compression headache. I know when my head feels that way I need to stop and rest immediately. It probably means I needed to stop and rest an hour or so earlier, but who knows? I get hot flushes, random pain, dizziness, constant exhaustion, breathlessness. I don’t want this to be my life.

Sometimes I get out and do things. Others I lie on the couch and struggle to summon the energy even to heat up a bowl of soup for lunch. I’m working, but less than usual. My social life is carefully doled out, like strictly rationed treats, and sometimes it’s still too much, but without social contact I won’t cope at all. Meanwhile I’m also trying to repair a hip injury, which requires a consistent approach to exercise that I am simply not capable of right now.

This all sounds dreadful, but I’m a lot better than I was, and I think I’m probably on the road to full recovery. I am better, this time, at not overdoing things (it would be hard to be worse!) and more likely to rest when I need to. That will help. I’ve just had my fourth booster. That will help, too. But it will almost certainly be a rollercoaster, with plenty of frustrating ups and downs. Everyone’s experience of long covid is different. Some people might never get better. Some will wind up with auto-immune diseases like Multiple Sclerosis or Parkinson’s. Covid leaves a footprint, and there’s no knowing who it will crush, and who will barely feel it.

Last time I had post viral syndrome I lamented the fact that I couldn’t use my body as a science lab – tracking everything, monitoring the smallest variations, trying to find correlations between minute changes in, say, nutrient levels, or hormones, and how I felt. I really wanted to understand what was going on with my body, and try to optimise my recovery.

This time, with so many people falling ill, maybe we can finally apply some science to this thing. We are sometimes very arrogant about our understanding of the body and what we can do, but the sad fact is we remain wildly ignorant. Sure, we can chop out mis-aligned hip joints, reposition them, and bolt them back into place facing the right way, but we can’t do anything like that to the immune system. Perhaps it’s time for a little humility, and a lot of science. And trying really hard not to get (or spread!) covid.

* For more on medicine’s lack of scientific rigour, check out Chapter 2 of Raising Heretics: Teaching Kids to Change the World.

Less is More

I grew up believing I was terribly lazy. My kids find this bizarre, because they see me as a workaholic. In my head I still identify as a lazy person, though I sometimes wonder we were all taught that we were lazy, because we didn’t give 100% all the time. Certainly the dominant ethos that I was raised with, at home and at school, really amounted to “if you’re not giving everything 100% all of the time, you’re slacking off.”

The trouble with this idea, of course, is that the human brain is not capable of giving 100% all day every day, and it’s not capable (nor should it be!) of caring about everything the same amount. We have to choose where to devote our energy. We have to have times where we’re just doing the minimum to get through, as well as times where we are actually resting. Really resting. Lying on the couch, feet up, lazing about style resting. That’s a literal requirement of physics, physiology, and biochemistry, that downtime. We are not physically capable of sleeping 8 hours, working 8 hours, and “playing” 8 hours. We need breaks. Lots of them. And even when we’re not on breaks, we can’t be working at maximum output continuously. It’s just not how we’re wired.

But the message I grew up with was clear. Work hard. Do everything as close to perfectly as you can manage. If there is a problem, work harder. If you don’t achieve what you wanted to achieve, put more effort in and you’ll get there. If anything is out of reach, keep stretching. Want to do well in that subject? Study harder. Want that promotion? Work harder. Need to lose more weight? Diet & exercise harder. You can fix anything just by putting in more oomph.

Which is why covid recovery, for some, is psychologically brutal. Because to get better, you need to rest. You can’t exercise your way out of it – that makes you sicker. You can’t diet your way out of it – that makes you sicker. You can’t push through it and work your way out of it – that makes you sicker.

But you also can’t exactly rest your way out of it. Because if you become bedridden, you lose muscle, you lose fitness, you lose lung capacity… everything goes downhill. If you stop thinking about hard problems, you soon lose the ability to think about hard problems. And, for me at least, if you stop seeing people, you start to completely lose your mind.

There’s an art of knowing when

Never try to guess

Toast until it smokes and then

Twenty Seconds Less

Piet Hein, Grooks II

So you have to strike a balance between physical and mental health. Between not overdoing it and not doing enough. Between staying alive and having a life. It’s tough.

It’s a little like recovering from a joint injury, like a sprained ankle. If you just run on that sucker, it will get worse, fast. But if you don’t walk on it enough, it won’t get better. And there’s no convenient readout that tells you when to stop, and when to do more. Of course, the ankle is just one joint. It’s a relatively constrained problem. There doesn’t seem to be any limit to the bodily systems covid can impact. And fixing some conflicts directly with the rest required to fix others, which is a joke at least as cruel as the one that made all the junk food we crave bad for us in the long run.

Until tech solutionism does something useful for a change and develops a forehead readout that tells us exactly what’s going on with our bodies in excruciating detail, and what to do about it, there’s no way of knowing how much is too much or too little. Medical support remains thin on the ground (and, frankly, doctors are still at the ‘throwing things at long covid and seeing what sticks’ stage of treatment).

I just want nice clear rules to follow. I will work any amount of hard to fix this. Unfortunately, working hard is exactly the wrong thing to do. So here we are, fumbling around, trying to maximise our energy and minimise our suffering, and remain viable human beings in the meantime. What fun.

Covid, like grief, doesn’t necessarily have an end

When you suffer a shattering loss, there seems to be an expectation – almost a requirement sometimes – that your grief has an end date. That it is contained, and follows some kind of predictable, regular path, with widely understood scope and processes. If you’re lucky, an outpouring of kindness provides casseroles and flowers for a week or two, and then life goes back to normal. Except, for the bereft, it never actually does. New foundations must be built. New coping mechanisms created. A new life constructed out of the ruins of the old one, perhaps looking much the same, but irrevocably different. And grief, of course, never ends.

Eventually you learn to incorporate grief into your life such that you can, for the most part, carry on. There will always be times, though, when it crashes over you like a wave. Sometimes pulling you under, sometimes merely leaving you cold and shaken.

Obviously that’s intense grief. Some griefs are smaller – more transitory – though they do tend to accumulate, and trigger surges of the griefs that came before them.

There’s no objective calculation that tells you how you will experience any particular loss. For some, the death of a parent is little more than a relief. For others, a devastating blow. Sometimes a chance met stranger becomes a fundamental part of your life in moments, and their loss is devastating. There’s no equation that can tell you how close a person is to your core, how connected they are to your heart.

A month ago I finally caught covid, after dodging it through a combination of caution and luck for over two years. It turns out that covid is a lot like grief. Some will experience it sharply, but briefly, while others are shattered by it indefinitely. Still others barely even know they have it. And we still expect it to have an end date.

Vaccination helps reduce the severity, but there’s always a risk of ongoing effects, and there’s no known way of calculating who is at risk. You can be young and fit and suffer for years. You can be older and more sedentary and be over it in days.

Yet it feels as though we have developed a narrative for handling the idea that someone we care about has covid. We recognise that everyone’s experience will be different. We check in diligently for a week or so, but just as quarantine ends on day 7 (except it doesn’t, as some symptoms require you to remain in isolation, although few people seem to know that), so, too, does our care and concern. Just like grief, we require covid to have an end date. To stop worrying us. To stop being difficult.

We expect workers to return after 7 days. We expect students to be back in class. We expect all disruptions, and causes for concern, to be swept neatly under the carpet. Secure in our smug “Only old people die” story, which is both untrue and deeply dubious from an ethical standpoint, we look away from the auto immune disorders, cognitive dysfunction, and heart problems that we know are accumulating, and bury our heads in the sand.

Peek a boo, I can’t see you

Everything must be grand

Book a pee, you can’t see me

as long as I’ve got me ‘ed in the sand

Peek a boo, it may be true

there’s something in what you’ve said

But we’ve got enough troubles in everyday life.

I just bury me ‘ed.

The Ostrich, Flanders & Swann

Just like grief, or climate change, or any other complex and terrifying phenomenon, it’s much easier to believe it will just go away. We’ll get over it quickly, or solve it with technology, or it won’t happen to us. The trouble is that there’s no way of knowing who it will happen to, nor even what will happen. It’s entirely possible, indeed quite likely, that there will be long term effects of having had covid that we don’t even know about yet.

It’s much easier, and more comfortable, to look away. To pretend this is just another flu. To “go back to normal”, as though we’re not facing a threat of unknown magnitude. As though there will be no consequences. As though we’re safe.

Five weeks post infection, I know that’s not true for me. Like grief, covid has left a heavy footprint on my body. Who knows what bruises I’ll find in a week, a month, a year. Perhaps I’ll find that new foundations must be built. New coping mechanisms created. A new life constructed out of the ruins of the old one, perhaps looking much the same, but irrevocably different. Just like grief, it’s possible this will never end.

We can’t keep looking away.

This is something I will remember

When my daughter suggested in December that she buy tickets for Andrew and I to go to Midnight Oil for Andrew’s birthday, I hesitated. Omicron wasn’t yet a big deal, but I was still nervous about crowds, and we’ve been incredibly cautious. Here we are in April, and we’re still being super cautious, but the concert was outside, and… well… it was Midnight Oil’s farewell tour. They’ve been a big part of our lives. How could we say no?

So there we were, last night in Rutherglen. All Our Exes Live in Texas were a fabulous warm up, followed by the amazing Hoodoo Gurus, but Midnight Oil is where our heart, our history, and our activism come together in Peter Garrett’s passionate roar. From the moment the Resist Fist clutching a flaming earth appeared on the screen I was transfixed.

Two Red and Black Tickets, on red AAMI lanyards, with a picture of the Midnight Oil Resist cover - a red first holding a flaming red earth, on a black background.

All of my emotions were on that stage all night. I cried. I raged. I soared in ecstasy. I screamed, and sang until my throat was raw. (I’m doing an excellent Barry White impersonation this morning.)

Every song is a complete act of protest. Every line a statement of outrage, of desperate sorrow, of a demand for justice. Where some try to write stirring speeches, Midnight Oil put their heart and soul into songs that give no quarter. That tear down our complacency and replace it with a burning urgency for change. They give eloquent, searing voice to our yearning for justice.

It amazes me that Rob Hirst’s drumsticks don’t catch fire. There was one particular drum solo last night that didn’t seem physically possible, it was a frenzy of sound and movement that created an extraordinary moment. Surely it took five drummers, not one, to produce that magnificent complexity. But it was the acoustic version of My Country, when Rob’s sweet, sweet voice joined Peter’s, that took my heart out, tore it into shreds, and reassembled it into something better.

Delayed from March due to covid ripping through the band, and other concerts cancelled due to the kind of amped up storms that are par for the climate change course, Peter Garrett declared that it was no longer the Resist tour – they were now calling it the Persist. And that is singularly apt, for a band that has resisted, and persisted, and spoken up for what they believe in, from start to finish. This is something we will remember. Remember. REMEMBER!

Is the whole world running on empty?

I am starting to lose count of the number of people I have spoken to recently who just have nothing left in the tank. No energy. No motivation. No bounce left in the bungee. It’s the pandemic inside the pandemic.

Everyone has reasons for it. We’re all dealing with a lot. The usual daily life dramas and complications. The long term health issues, conflicts, difficult work situations, difficult home lives… it all takes a toll. But all of that “normal” stuff is now happening against a background of constant strain.

Last week one of my kids had covid, so we spent the week in isolation, feeling unsafe in our own home. We did all the right things – kept all the doors and windows open, had an air filter running 24/7 in their room, left food at the door, used separate bathrooms, had no contact. And we were lucky, they were double vaxxed and felt better pretty quickly. We stayed home, worked as usual, didn’t have to go shopping or do any dropping off or picking up, didn’t go anywhere or see anyone. In some ways that sounds almost peaceful, but we ended the week exhausted. As though we’d been running some kind of lifestyle marathon without leaving our home. In a sense, perhaps we were.

I think we might be underestimating the strain of this whole “living with the virus” gig. Aside from the constant risk calculation, and the “will we/won’t we” of every outing and every friend catch up, the longing to attend large events that we’ve missed over the last two years (I’m looking at YOU, Comedy Festival!) set against the fear of catching covid at them, the constant risk of cancellation from somebody winding up testing positive or being a close contact… I say “aside from that,” though that, in itself, is a lot… nonetheless… aside from that, many of us are still living unusually constrained and unsatisfying lives. And while we’re doing that, we’re watching other people living what look like perfectly normal lives as though there is no risk at all. It’s hard to fathom.

For those of us who are still working from home a lot more than usual, we’re suffering from decreased connection with our colleagues, and lack of social contact from things that used to seem trivial, like the casual conversations in the tea room. And I think we also underestimate how much those casual interactions fuel us.

We’re not going to the usual events, not going out as much, not playing as much, not travelling as much, not entertaining as much, not relaxing as much. We’re just not getting all the ways to recharge that we used to. And yet we’re demanding more of ourselves. There are wars, environmental catastrophes, unspeakable politics, and elections where the choice often seems to be between bad and worse. (Vote Green or independent! Shake them up!)

We’re trying to be vigilant about covid avoidance. Considering whether we need to do a RAT today or whether it might just be allergies. Wondering whether it’s ok to dine inside at the cafe when it’s cold. And trying to work more, with less support. All while dealing with all of the usual difficult life events on top of it all. Seeing people we love, even without touching them, releases all kinds of positive hormones into our bodies. We’re not getting as much of that, especially if loved ones are interstate or overseas. We’re asking more of our bodies, and supporting them less.

Plus, of course, the extra fuel for everyone’s anxiety that is the variant waiting game. What will the next variant be? How hard will it hit? Are we past the worst of it? Will things get better? Is the worst yet to come?

No wonder we’re exhausted. I’m trying to build up social contact while managing risk, but I’m still a long, long way from getting what I need. Some days it feels like I’m just dragging myself through life, waiting for a better future that might never come. And yet we can’t just stop and wait until it gets better. Ironically, that would probably make things worse.

I don’t have any answers, but I do know that we’re not alone, even in iso. Chances are, however you’re feeling, a whole lot of people are probably feeling the same. I know some of my friends get grumpy with me when I post those sad feelings online, they want me to get over it, move on, buck up! But at the same time, so many people seem to respond to the feelings, to be relieved that they’re not the only ones who feel this way. Maybe that’s an answer, of a sort. Or at least a strategy. Maybe we need to tell each other how we feel more, whether it’s on social media, on zoom, or in person. Maybe connecting over our lack of connection is one way to help us survive. A way to feel less alone. It’s worth a try.

Losing our way

I remember the early days of the pandemic, when we didn’t know whether bringing in packages from outside would give us covid. Some people left packages out in the sun for three days, others disinfected the hell out of them. Some people didn’t let anything into their houses. Some people started wearing masks early on, some thought it was pointless. Use the app/don’t use the app it’ll track you and achieve nothing useful. We just didn’t know, and the uncertainty was terrifying.

Gradually we settled into some kind of pattern. Numbers rose, we went into lockdown, numbers kept rising, we locked down harder. We knew what we needed to do, and most of us did it. Stay home as much as possible. Mask if you have to go out. Keep your distance. Get tested if you have any symptoms, or have been in contact with anyone who has tested positive. Check in with a qr code. Sanitise, sanitise, sanitise. Numbers went down, we let up a little, numbers went up, we locked back down. We knew what had to be done, even if we hated it.

There was a lot of screaming from the let it rip brigade, but at least in Victoria we sneered and largely ignored them. We made a lot of sacrifices, but we knew we were doing it for the greater good. Murdoch, Morrison, and the “die for the economy” brigade felt, for the most part, like they were safely outside our borders, which, by the way, were firmly shut. There was the odd glitch, like the rules being different for sportsmen, but we were largely hanging together and getting this thing done.

And we nailed it. Until Delta ripped through a NSW that thought itself invulnerable, and used them as a jumping off point. Things started to get a bit hairy, but we went back into lockdown, knew how to do this… here comes the new lockdown, same as the old lockdown. It didn’t work. The “let it rip” “live with covid” “we have to open sometime” brigade suddenly seemed in the ascendant. “Open up. It’ll be fine. We’re all vaxxed.” was the hymn of the day.

So we opened up. And it seemed… well… not fine, not for many people, especially the vulnerable, but it seemed like we were mostly going to almost get away with it. We were still checking in, masking (at least in Victoria), and playing it fairly safe. We knew that if we got sick we could get tested, and isolate, and keep everyone else as safe as possible. We watched the numbers (again). They were bad, but manageable.

And then omicron changed the rules of the game. And the political response, even in Victoria, was… nothing?

The silence was deafening. The only sound was the roar of the engines of people circling Melbourne, looking for a testing site that wasn’t closed because it was over capacity.

Occasionally there would be a brief announcement, like “close contact isn’t a thing except in the home for more than four hours”, which was bewildering since omicron spreads more easily than any previous variant.

Or “You don’t need a pcr, use a RAT” which certainly made us smell a rat, since rats were impossible to get.

Or “we’re all going to get it, and it doesn’t matter”, never mind the immunocompromised, the aged, the apparently expendable portion of the population with pre-existing conditions, or those who, for reasons no-one yet understands, will wind up permanently disabled by long covid.

Or “the health system is fine” while frantic messages from paramedics, nurses, and doctors online tell a wildly different – and utterly horrifying – story.

Things get rapidly worse. Businesses close due to staff shortages. Hospital staff work consecutive shifts and are still short staffed. Supply chains falter. Ambulance Victoria puts out messages saying “don’t call an ambulance unless you are dying, and even then you’ll wait an hour or more.”

Friends and family start getting covid. We leap into the struggle to access pcr tests, rats, healthcare, ANYTHING, and come up empty handed every time. We search in vain for evidence that we are doing the right thing. For government rules that will keep us, and those around us, safe. We wait for policy announcements to fix this, and watch the numbers tick up even though no-one can get tested anymore. I personally know of many cases of covid not included in the official numbers, yet I still watch the official numbers, feeling ill every time they are announced.

The refrain from my friends is eerily in tune: We’re sitting ducks. We’ve been hung out to dry. We’re fucked.

Normally, when things start to fall apart, governments do something. We might not like what they do, but they’re visible, they’re at least doing something. But now, they seem bewilderingly, appallingly, callously absent.

It’s surreal. If you wrote a film script like this it would be laughed out of the room for being wildly implausible. It feels like the end of the world, and we’re not even trying to stop it. Do we stay in? Do we go out and pretend nothing is happening? What happens now? Who knows? Certainly not the people who are supposed to be in charge.

These are the hugs I miss

I know it’s important to focus on what we have, and to be thankful for it, but for those of us with loved ones out of reach during this pandemic, it’s hard not to dwell on our losses. On the folks we’re missing. On the hugs we’re craving, with no way of knowing when they’ll be within reach again.

And there are not enough people filling our days, there aren’t enough things to do or places to go. Life is hectic and there’s too much to do, yet somehow not enough to distract us from the gaping holes in our lives. Every time I am a little tired, or my hip aches particularly fiercely, or anything makes me a bit sad, the overwhelming anguish of being separated from my people seizes on the chink in my armour and floods my system with yearning.

Video calls are bitter sweet. Beloved faces right there in front of us, yet out of reach. Sweet, familiar voices land in our hearts like soothing ointment, but at the same time they leave raw scars. I spend an hour on a call with a loved one, and then spend all day alternately smiling and heaving deeply sorrowful sighs, as I alternate between how much I love them, and how far away they are.

It leaves plenty of time to contemplate the nature of hugs. Hugs have personality, just like people. One person can give many different hugs, but hugs between the same two people tend to develop a distinctive character over time. These are the hugs I crave:

The Fierce but Fleeting, or FbF – a short, sharp, intense hug, the FbF uses full body contact to convey deep affection and emotional need in the minimum time, moving straight on to coffee and conversation. The FbF is no nonsense, but heartfelt. A meaningful hug in a hurry.

The Fierce and Lasting, or FaL – as intense as the FbF but sustained for as long as both participants consent, the FaL is my favourite. A full body hug with no room for so much as a whisper in between, the FaL conveys deep affection and a yearning for the closeness we have been denied for too long. There may be tears. Eventually the FaL must give way to basic life support such as eating, drinking, and other bodily functions, but the need to postpone the moment for as long as humanly possible is overwhelming. The FaL is the maximum amount of hug in the maximum allowed time. It has nowhere it would rather be than in your arms.

The Friendly and Affectionate, or FaA – a firm hug with the intensity dialled back, this hug is very pleased to see you, but quite clear on its boundaries. The FaA conveys affection but not need. It is the friendly, neighbourhood hug. The FaA will be delighted to see you around, but it will not hunt you down, nor outstay its welcome.

I even miss the Tentative and Cautious, or TaC – An A-Frame hug, which aims to maintain minimum risk of intimate personal contact, yet still constitutes an embrace. In the TaC, arms and shoulders touch, possibly even cheeks in extreme cases, but nothing below the collarbone. It is the entry level hug, that promises nothing, but speaks of mild affection.

I use different hugs with different people, but I dream about Fierce and Lasting hugs with my far flung besties all the time now. When I can have them in real life, I might have to be reminded to let go.

What are your favourite hugs like?

Are you being bullied?

Once, when one of my teens was being bullied at school, I was astounded to recognise behaviour that had been directed at me at work. I ranted and fumed. “Do they all get the same handbook? How the hell do they all use the same tactics???” My friend Michele suggested that they do it because those tactics have been used on them… and they work. She described it as a circle of contagion, rather than an instructional manual. I suspect she might be onto something.

Awful though it is, there is a bright side to these repeated patterns – patterns can be spotted! (boom boom! sorry…)

This is good news! Because if you can see what they’re doing, it becomes possible to uninstall the buttons that bullies love to push. So here are some red flags to look for.

1. Making everything your fault. Bullies love to make it all about you, because it latches on to all of your insecurities and is really hard to fight. In the schoolyard this can be things like “You’re annoying.” “You’re difficult.” “You’re always upsetting people.” Note how these are non-specific, so really difficult to refute.

At work, it’s often about you failing to meet targets you didn’t know about, failing to attend meetings you weren’t invited to, or, again, being generically “bad” in ways that are super hard to refute or address. Things like: “You’re not a team player.” “You don’t fit the culture.” “You’re too enthusiastic/not enthusiastic enough/too demanding/too quiet…” There are always ways to argue you’re not as good as you really are: You’re too new to the field, too long in the job, too young, too old, too different, too much the same…, or in friendship groups, you’re too loud, too quiet, too political, not political enough… And they’re most effective when they tap into your imposter syndrome, because you’re more likely to believe them.

2. Isolating you/Cutting you off from your support. If a bully finds out you’ve gone to someone else for support, they’ll often say you are breaking a confidence, going behind their back, betraying their trust, or behaving unprofessionally. They’ll berate you for putting an unfair burden on the person you went to, or dragging them into a conflict that’s none of their business and not their problem. It’s in a bully’s best interests to have you isolated and unable to fight back, so of course they will do everything in their power to make sure they can say whatever they want to you without facing consequences. This has happened to my teens in the schoolyard, and to me in the workplace. It’s a classic tactic. As a bonus, really effective bullies will also make you feel guilty for seeking support elsewhere.

3. Telling you everyone else thinks so too. I’ve seen this in workplaces, on committees, and in the schoolyard. It’s another classic tactic. “No-one else will tell you this, but…” or “Everyone is coming to me and saying that you’re…” or “Everyone is miserable because of you.” “I’ve never had so many complaints.” “Everyone else is too nice to say so.” “Everyone feels the way I do.” These are designed to make you quietly exit the scene, stage left, and leave the bully in command of the stage. Or, even better, they provoke conflict between you and everyone else, so that the bully winds up looking like the good guy by comparison. It’s amazing how often “everyone” actually boils down to “me, myself, and I”. Bottom line is, if no-one else is saying it to you, they’re not saying it at all.

4. Controlling your response. This one is particularly effective if it comes on top of the first three tactics successfully making you miserable and vulnerable. At this point the bully gives you a way out. You can leave the group (leaving the bully, again, in command of the stage), step down from a role, leave a committee, or simply stop standing your ground. Basically, give the bully what they want, and you “won’t get hurt”. It’s a standover tactic. And a horrifyingly effective one.

5. Making you the bad guy. Here, the bully turns the tables and tries to make everyone else think that you are making up stories about them (often right when they’re making up stories about you), performing poorly at work, or being a bad friend. They’ll try to push your guilt buttons, at the same time as making everyone else think you’re awful. This has the twin goals of driving others away from you, and making you more likely to crumple and walk away yourself. Sometimes they’ll do this using some of the other tactics, like making a big deal out of you “breaking confidences” and being untrustworthy, because you told someone else how they were treating you.

Bullies want to manipulate you and control you into doing what they want. Don’t let them!
I’ve just shown this to my teens and they have suddenly recognised times when they were bullied that they didn’t identify at the time. I hope you will share it, and that it helps you identify these horribly effective tactics, both when they happen to you, and when they happen to people around you. If you know what’s happening, it may help you to stop it.

Fear itself

On Sunday Melbournians were startled to learn that lockdown was ending. Not just startled, but thrilled, joyous, horrified, alarmed, frightened, ecstatic, shocked, and excited. Among other things. I think I was probably not the only one who felt all of the emotions. ALL of them. All at once. At maximum intensity.

It’s perhaps not surprising, then, that it has taken me a couple of days to process what is going on in my heart and my head, and why threads like this beautiful one from Marieke Hardy sent me into floods of hot, uncontrollable tears without warning.

Melbournians have been in lockdown a lot. More than anyone in the world. And it has been hard. So hard. But we knew we were doing the right thing. The alternative was thousands and thousands of deaths that we could avoid. So we avoided them. How could we choose to do otherwise, the murdochracy and the federal government notwithstanding. How could we live with ourselves if our need to be out and doing things resulted in thousands of deaths? So we stayed inside. We pined for our loved ones. Across the city was as far as interstate or overseas for much of the time. No hugs. No three dimensional, high bandwidth, simply being together. And here we are, coming out the other side. What is there to be sad about?

But I am not the same person I was in February 2020. What’s changed? More than anything, I think it’s the fear. I am frightened. I’m frightened of strangers nearby without masks. I’m frightened of strangers with masks, if they come too close. I’m frightened of being inside. I’m frightened of the next variant and the next and the next, and terrified that this pandemic is going to dictate our lives for many years to come. I’m frightened of our health system becoming overwhelmed. I’m afraid I won’t be able to see my family and friends interstate and overseas for years.

I’m frightened that this end to lockdown will be snatched away faster than it was offered. I’m frightened that I won’t ever learn not to be afraid of strangers, or remember what it’s like not to watch the behaviour of others with narrowed eyes and a frantic calculation of risk. I’m frightened that life will never be the same, and I’m also frightened that we will fail to learn from everything we’ve seen in the last two years and that life will be exactly the same.

The fear is a stone in my chest, heavy and foreboding. This pandemic feels like a snapped cable, scything through possible futures and cutting down hope and possibilities with wild, chaotic bursts of random chance, each flailing swipe utterly redrawing the shape of tomorrow.

I’ve never suffered from clinical anxiety, but now I feel as though anxiety is all I have. All I am. All I can be.

At least now I have identified the source of my tears. I know why I haven’t yet organised a single social event, or planned so much as a dinner out. I think it may take some time to master my fears. There are so very many of them. They are so intense. They form an almost impenetrable shell around me, one that will take some work to break through.

I can do this. We can do this. There is hope, even though it is changeable and sometimes hard to find. There are still people. There is still love. There will be a tomorrow tomorrow, and another one the next day. One breath at a time, one foot in front of the other, one cautious venture out to the local cafe at a time. Hold on to each other. Together is how we’ll get through this, and together just got a little easier around here.

Those lockdown feels

Today is one of those days when it feels like every single nerve in my body is completely exposed. Everything that happens feels intense, whether good or bad. It just feels too much. It’s almost as though the absence of hugs has removed a crucial conduit through which we process our emotions. As though touch balances us by calming the extremes, bleeding off the lows and making the highs manageable, but also lasting.

I am dying to wrap myself around my friends. To feel my face against theirs, to match their breathing with my own, to consume the feel of their heartbeats like a drug.

I turned fifty recently. People have been sending me beautiful, thoughtful gifts. Orchid earrings (I LOVE orchids), flowers, wine, chocolate. My bestie is making me the most beautiful quilt in perfectly Linda colours. A friend I haven’t spoken to for ages sent me earrings, a pendant, and a keyring made of wooden discs laser engraved with my organisation’s logo. Lots of people donated to Transcend on my behalf.

I feel loved. But bereft at the same time.

This has been the weirdest week. On Wednesday I woke up and went downstairs to chat with my husband and play with the cat, and I noticed a weird artefact in my vision. There was a patch in my vision surrounded by a brightly lit line that was rippling. I couldn’t read because the patch was in the way, and I’d never experienced anything like this before. Unnerved, I called Nurse on call and spoke to Laura, who asked me lots and lots of questions, and seemed very concerned with whether or not I had a headache. She encouraged me to see a GP the same day, and urged me to call back if my symptoms changed. By the time the call was over the patch had expanded beyond the boundaries of my eye and disappeared, but I remained unsettled.

Within 30 minutes I had developed a bad headache, so I called Nurse on Call back and this time she urged me to go straight to the emergency room. This is the third time in my life I have been told to go straight to the emergency room. Fortunately they’ve all turned out to be false alarms, but it’s an unsettling process, to say the least. It’s definitely better to go to the hospital and find out you’re ok than choose not to go and find out that you really should have gone, but it’s not a fun process. The nurse was talking about neurological issues, and I knew she was concerned I might be having a stroke. The “it can’t happen to me” part of my brain was warring with the “holy crap I’m dying” catastrophising part, and I was distinctly edgy.

Since we’re in a pandemic and Victoria is in the middle of an outbreak, I wasn’t allowed to have my husband with me (we didn’t even try, because we know the drill by now), so I went through the ‘check in’ process and wound up in a cubicle feeling stressed and vulnerable. One of the nurses asked me to put on a hospital gown, which, if you’re not familiar with them, could hardly have been designed better to make patient feel exposed (literally) and alone, gaping and open at the back as they are. They’d only be worse if they opened at the front. As I’m now fifty and much more assertive I declined the hospital gown (why did I say yes in the past??) and remained in my own clothes, which gave me at least the illusion of control.

I sat down on the emergency room hospital bed feeling anxious and alone, and the bed started to shake. Having been told I had possible neurological issues I immediately thought “hell, is this real, or is it in my head?” I watched the bed for a bit and listened to the rumbling, and then the two nurses in the cubicle rushed to the front of the room and said “what was that??? Is it an earthquake??” at which point I figured it was not in my head. An actual earthquake came as a relief. (And, honestly, it was exciting. Never occurred to me that lives could be at stake, or any significant damage – we don’t get that kind of earthquake here, or at least haven’t in the past!) I jumped on twitter to find every Melbournian (and a few Canberrans, Sydneysiders, and people further afield) saying “hey, did anyone else feel that?” and then my phone started to melt down with text messages.

To put this in context, we also had the most bizarre riots on the same day, with tradies mixed with nazis and other alt-right fascists rampaging through the city and staging nonsensical protests on the West Gate Bridge. We were well on track for the apocalypse. I don’t think any of us would have been surprised to find a swarm of locusts in our backyards.

It was quite a day.

It turns out that I get migraines now, and this explains the visual disturbance and the headache, but the ER doctor was very concerned about my blood pressure, which was high. I mean, I was in the ER concerned about possibly having a stroke, worried about catching covid due to being in a hospital during a pandemic, hearing about riots and experiencing an earthquake, and my blood pressure was showing signs of stress. Go figure.

It’s just relentless. Life doesn’t stop lifeing at us just because we’re in a pandemic. Kids get sick. We get sick. Parents get sick. Things break. We break. Job dramas. House dramas. Pet dramas. Family dramas. Life goes on, but here we are, feeling quite bereft of the resources to deal with it.

And yet, look at us. Mostly dressed (when we need to be), mostly washed (ditto), getting up and doing things day after day. It may feel like we’re not coping, but as my friend Lisa pointed out quite emphatically today, we need to celebrate the wins. We need to celebrate being alive. Making it from one day to the next. Connecting with our friends (when we can). Getting food on the table. Just surviving is a win. Lisa asked me how far I have come in the last five years, and professionally the answer was obvious – I have started a Data Science Education charity, written a book, educated a lot of teachers, created a lot of resources, built a lot of partnerships.

But personally, perhaps the most important answer is: I have figured out that I get to choose. Who I work with. Who I spent my emotions and energy on. How I live my life. A lot of people are changing jobs, moving to the country or the coast, figuring out what matters to them. That’s a gift. And maybe some of the things that matter to us are out of reach just now. But they will come back into our lives, all the more precious and valued for having been missing. We get to choose. And tonight, I am choosing to celebrate how far we’ve come.

Hang in there. Get vaccinated. Stay connected. And celebrate more.