Hall of Fame

I have a friend who works in Malawi with Doctors without Borders, providing them with lab support so they can save lives. She’s a hero. You won’t know her name.

I have a friend who, with his team, was instrumental in developing a new cancer treatment that has the potential to save countless lives. Even when the treatment becomes public, you won’t know his name. He also invests a lot of time and energy into educating people about science and climate change. He’s a hero, too.

I have a friend who works in biotechnology, creating new and sometimes radical sustainable solutions to old problems. That sounds heroic to me, but you’ve never heard of him.

I have another friend who is about to travel to Zambia to work on a project aimed at saving the lives of countless mothers who die of diseases that are laughably preventable in the west. She’s a hero. You don’t know her name.

I have a lot of friends who invest their hearts, souls, and every spare moment into the education and welfare of the young people they teach. They are heroes, but unless they’ve taught you, you’ll never know their names.

Yet you probably all know the names of dozens of people who are famous for pretending to be someone else, for making lots of money, for being able to kick and catch a ball, for looking good in a dress, or for simply being famous. You may even know the names of their children, who they’re dating, and the shoes they wore on this week’s random red carpet.

I suspect none of the people I listed above want to be famous. In fact most of them would be appalled at the thought. But a quick look at your average newspaper shows numerous profiles of people who are famous for their fame, and maybe one of someone who has done something to make the world a better place. On a good day. Many days there are none. And don’t get me started on magazines. Just don’t.

So what are we teaching our children? As they watch us, wide eyed, and take in everything we do as a model for their own behaviour. Learning what to care about, and what their priorities should be. While we gossip about who celebrities are sleeping with, and how dreadful they looked in that dress, we despair about our children growing up shallow, caring about appearance over substance, and not being interested in science.

How would a magazine sell if it profiled only people like those friends I mentioned above? People who make a difference to the world. People who invest themselves in changing the world. People who care about what they do, and do things that matter. Would it sell? Would anyone care?

At the Oscars, the #askhermore campaign encouraged journalists to care about more than what an actress was wearing. But what about caring about more than fame for its own sake? What about teaching our children that the pinnacle of human achievement is not being famous? That they can Be More? That’s what I want my children to learn. Go ahead. Show them they can #BeMore.

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Narrativium

Like many I was both glad to hear that Terry Pratchett had been spared the worst ravages of his rare and traumatic form of early onset Alzheimers when he died last week, and gutted to know that his magnificently satirical worldview had been ripped away from us. I have a close and deeply personal relationship with Terry’s books. They have given me comfort, perspective, and so much laughter ever since I met them. Each one of them is a living creature.

Terry managed to make Death a sympathetic, entertaining, and occasionally even pitiable character. Throughout the book Death became more human, more curious, and more empathic about his duty. He delivered a kind of justice, and eased the transition from life to after-life. When death impinges on my own existence, I often turn to the Discworld Death for comfort.

No topic was too controversial for Terry to prise open and place under the microscope of the Discworld. He took earthly problems like racism and tweaked them ever so slightly, so that in his fantastical cultural melting pot, Ankh-Morpork, the city became ever more cosmopolitan – welcoming, as it did, trolls, dwarves, and even the undead. But his vampires sign “The Pledge” and foreswear “ze B-vord”, becoming obsessed with other pursuits, such as photography or coffee in place of blood, and his werewolves, some of them vegetarians, suffer from dreadful PLT – Pre Lunar Tension.

In Ankh-Morpork speciesism was much more interesting than racism – in Terry’s words “Black and white lived together in perfect harmony and ganged up on green.” In each subsequent book, the Discworld became richer and more complex, and allowed us to dig into the roots of our society and our psychology. He made a fantasy world of dragons and magic, and used it to hold up a slightly twisted but inordinately clear mirror to life on Earth.

His Patrician of Ankh Morpork, Havelock Vetinari, must surely be the most intellectually gifted tyrant of all time. “A great many rulers, good and bad and quite often dead, know what happened; a rare few actually manage, by dint of much effort, to know what’s happening. Lord Vetinari considered both types to lack ambition.” Like the Discworld Death, Vetinari’s ruthless and tyrannical rule displays an unexpectedly compassionate and comforting nature. Under his rule Ankh-Morpork works.

Pratchett’s world has villains and heroes, and even leather clad barbarian heroines (who complain about the way the obligatory leather outfits chafe). In his earth-based series, “Truckers”, he tackles equal opportunity more directly, with his nome-ish society uncertain about the wisdom of letting girls learn to read:

“I told her we were going to get married, and all she could talk about was frogs,” said Masklin.

“That’s females for you,” said Gurder. “Didn’t I say that letting them learn to read was a bad idea? It overheats their brains.”

“She said the most important thing in the world was little frogs living in a flower,” Masklin went on, trying to listen to the voice of his own memory. He hadn’t been listening very hard at the time. He’d been too angry.

“Sounds like you could boil a kettle on her head,” said Angalo.

Whenever I’m sad, sick, or just bored, I re-read a Pratchett book. They give me hope, perspective, and laughter. They speak to something deep in my soul. To my fundamental optimism about human nature. To my love of justice. To my quirky sense of humour. To my need for hope.

In Pratchett’s worlds, stories have power. Narrativium is a fundamental element on the Discworld, and it is essential to stories the way Carbon is essential to Earthly life. If Narrativium existed here, the change.org petition demanding Death bring Terry back would work, if only because so many of us want it to. The good guys would win in the face of seemingly insuperable odds (“it’s a million to one chance, but it might just work”). And death would be a relief – almost a meeting with a compassionate friend – instead of the terrifying prospect most of us find it to be.

In a world where Narrativium held sway, I would be able to walk right in to the office of the Patrician (perhaps bearing a jammy devil to bribe the guards), and put the wrongs of the world right. Magic would be real, but it would be hard work and always exact its price. Rules would be important, and carefully broken. “Look, that’s why there’s rules, understand? So that you think before you break ‘em.”  The end of the world would be little more than a temporary inconvenience. “Some humans would do anything to see if it was possible to do it. If you put a large switch in some cave somewhere, with a sign on it saying ‘End-of-the-World Switch. PLEASE DO NOT TOUCH’, the paint wouldn’t even have time to dry.” 

And Terry Pratchett would be immortal.

In fact, if you take his worldview to heart, perhaps he is.

“In the Ramtops village where they dance the real Morris dance, for example, they believe that no-one is finally dead until the ripples they cause in the world die away – until the clock he wound up winds down, until the wine she made has finished its ferment, until the crop they planted is harvested.  The span of someone’s life, they say, is only the core of their actual existence. “

“Have you got any last words?”

“Yes! I don’t want to go!”

“Well, succinct, anyway.”

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Lifters, Leaners, and Leaning in vs Leaning on

There is a lot of talk these days about lifters and leaners, with leaners used as pejorative term. If you lean, you’re a dead weight. A passenger. Someone else‘s responsibility. Not doing that most crucial of all tasks, Pulling your own weight. Yet this shows a fundamental disconnect between the way the conservative side of politics seems to think we should be – aggressively, uncompromisingly independent, standing rigidly alone – and the way social animals like people really behave.

The very nature of social animals is that they lean. I could use the old analogy of a circle of people each sitting in the lap of the person behind them, but that implies a kind of linearity that doesn’t apply at all. It’s more like a giant game of kerplunk – a messy, interwoven structure of sticks, where every stick leans on every other stick. You can take individual sticks out (if you’re super careful) without completely destroying the whole, but no stick can stay up on its own, and each time you remove one the structure changes. Remove too many and it becomes fatally weak.

We are programmed to lean. Without leaning, we’d all go kerplunk. I don’t know about you, but I’ve had plenty of kerplunk moments, and they are neither graceful, nor proudly independent. They are without doubt the lowest moments of my life. But leaning isn’t simply a case of asking for, or even accepting help when you need it. Leaning means allowing yourself to be vulnerable, and vulnerability is fundamental to connecting with others.

If we can’t be open with others, we can’t truly connect with them. Brené Brown sums it up most eloquently: “Vulnerability is not weakness. I define vulnerability as emotional risk, exposure, uncertainty… I have come to the belief that vulnerability is our most accurate measurement of courage.”

So it’s only through being vulnerable, through leaning, that we can be brave, and that we can fully connect with others. It’s only through allowing ourselves to weep, to cry out, and to need, that we also allow ourselves to experience love and joy.

I remember when we bought our house. A little while later we were away for the weekend and there was a wild storm where we lived. For the first time it hit me, like a physical shock – if something happened to the house it was our problem. There was no landlord to fix it.

Suddenly we were responsible for this hugely expensive thing, and it was scary. But then we had kids, and the fear of being responsible for a mere house felt like the fear of a teeny tiny red spider mite the first time you come face to face with an Aussie huntsman. Not in the same ballpark, not even in the same galaxy as this new, heart stopping, mind scrambling terror. This immense, breathtaking awareness of incredible vulnerability. This huge opening that allows people to go straight to your heart and set off incendiary devices inside its very walls, every time someone or something hurts or threatens your child.

It’s this very vulnerability that allows us to experience such an intense and passionate love.

Yesterday I wound up in the Emergency Room of the local hospital with a left arm that had inexplicably stopped working. They kept me in overnight, and I felt incredibly lonely, scared, and disconnected. They put me into one of those extraordinarily soul-destroying hospital gowns with the immodesty panel flapping wide at the back. I am convinced those things are designed to maximize vulnerability and trauma – because being in hospital isn’t traumatic enough in itself. So there I was, huddled on the bed, with the ER throbbing and teeming all around me. A chaotic vortex of alarms, bright lights, and wailing children.

My own family had headed off home to bed, and all I had was my computer, and a fortuitous wifi connection. I hesitated over Facebook, wondering whether to post something about where I was. I didn’t want to look like I was trawling for attention or sympathy. But actually, I really did want to trawl for a little of both. I wanted to be seen where I was, and to have what I was going through recognized. I wanted to reach out and say “hey, this is a bit scary” and have my friends understand.

So I compromised and posted a snarky comment about hospitals being unable to provide gluten free food in the ER (my goodness, that’s a post in its own right – of all the places that struggle to cater to a medical dietary requirement!)… and what followed was beautiful. I spent the rest of the (wakeful) night fielding offers of help, expressions of concern, and funny anecdotes designed to cheer me up. I felt connected. I felt grounded. I felt supported. And I felt loved. Because I had let myself be openly vulnerable.

Now a whole lot more people know what’s going on with my health at the moment. A whole lot more people are supporting me, cheering me on, and cooking me yummy lunches. Tonight I’m back home with a long line of tests and appointments in front of me, but I’m not afraid to tell people what’s going on, because I know that trying to hide these things makes them lonely, dark times to struggle through. Allowing myself to be a leaner, on the other hand, makes it into a festival of love and laughter, punctuated by blood tests and MRIs. I know which version I prefer.

Right now, leaning is what I need to do. Tomorrow, someone I’m leaning on might be leaning on me. And we’ll both be better for it.

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The Ultimate Answer

In my early twenties I was sick for about three years with a debilitating problem that nobody really understood, and maybe three quarters of the world didn’t believe in. I didn’t look unwell, but I got recurrent infections and was exhausted all the time. I could marshall my forces and look normal for an hour or two here and there, but the effort cost me days of recovery time. In the early stages I spent weeks on the couch, barely able to get up and go to the loo. Then I started to get better, but quickly plateaued in a no-man’s land called Chronic Fatigue Syndrome.

The worst part about CFS was the disbelief. My own parents, and many others, found it impossible to believe in something that they couldn’t see, and that doctors couldn’t agree on. Fatigue is difficult to quantify, so it was much easier for my parents to assume I was doing too much, and just getting a little tired, than to face the devastating impact the condition had on my life.

I eventually recovered from CFS, but I was never quite the same. I couldn’t manage late nights, tired easily, and still got more infections than your average bear. Gradually I built up my fitness and changed my lifestyle, trying to eliminate anything that might be holding me back.

But what lingered more than anything was a severe self-doubt. Deep down I wondered if I was just a hypochondriac, or chronically lazy. Maybe I was nuts? During the darkest times I even wished I had something drastic, like cancer, if only because it was relatively well known and understood, and people might stop doubting me if I could hand them a neatly packaged diagnosis to excuse what I saw as my many failings. I felt awkward and self-conscious every time I left a party early. I felt like I needed excuses to justify who I was and how I behaved.

When what seemed like a promising new friendship collapsed after I left my friend’s party at 9:30pm, with her incredulous and disappointed response echoing in my ears, I could have screamed in frustration. Never mind whether there was actually a connection between the early departure and the end of the friendship. In my head my feeble body was getting between me and my life, and there seemed to be no valid reason for it. I felt like a failure.

Seven years ago, when I began to experience pins and needles in my hands and feet all the time, it seemed like another round of Guess The Diagnosis, and I wasn’t all that keen on playing. Although I was getting what felt like electric shocks in my feet with every step when I first got out of bed, it generally settled during the day, and was more odd than distressing. A normal brain MRI seemed to confirm that there was nothing much going on, and I stopped thinking about it. (In hindsight I should have wondered about that. What are the chances of my brain being normal?)

Then a few months ago parts of my feet started to go numb. I kept thinking I had something stuck to the bottom of my foot, because it felt as though there was some interference, something stopping my left foot from quite hitting the floor. I assumed it had to do with the toe injury I’d inflicted on myself when I ran through a doorway and missed a few years ago, until it moved to the other foot, which had a relatively good relationship with doorways and no injuries that I knew of.

The pins and needles got worse. Exhaustion became my constant companion, far more draining than I can readily account for. Random knives now stick themselves into different parts of my body, and then disappear. Sometimes my feet don’t quite clear the floor when I take a step, and today, just for something different, my fingers became weak and shaky and I started to drop things.

Working part time, kids, and life, are almost more than I can handle. Hot weather seems to make the symptoms much worse. I lose my balance occasionally. I get dizzy easily. A whole list of relatively minor complaints that seem trivial when handled individually become scary when you list them side by side.

Yet scary though it is, I almost want a disturbing diagnosis. I’m more afraid of not having an answer than of having a scary answer. More than anything I am looking for a reason to go easy on myself. To rest when I need to rest, without screaming at myself for being a useless slacker.

Yesterday I was messaging a friend about how frustrated I was feeling with myself. I was at Sorrento, and I felt I should have been making the most of being down there and going for a kayak, or at least a swim, but all I wanted to do was lie on the couch. My friend seemed nonplussed by all this self-aggression. “You’re allowed to do nothing sometimes,” he said. “You need a rest. You’re burning out. You need to go easy on yourself.”

As though I had been given a note to skip school, I immediately relaxed and did nothing for a few hours. But it started me thinking. Why do I need a diagnosis to be kind to myself? Why do I need a medical certificate to give myself permission to rest when I’m tired?

Sometimes, when people find out I have a PhD in Computer Science, they say “oooh! You must be so smart!” and I shrug ruefully and say “More stubborn than anything.” It seems I have turned this stubbornness on myself, and used it to push through and keep working, in sickness and in health, until I literally drop.

My feet still tingle to the point of pain sometimes. They go numb, I lose my balance, and I am so very, painfully tired. I have no diagnosis, although I have a specialist appointment in a few months’ time. But with or without a diagnosis, I’m going to write my own medical certificate:

To whom it may concern,

Linda McIver is suffering from extreme stubbornness. She may occasionally need to be whacked about the head with the frying pan of perspective. Until further notice she has permission to rest when she needs to without feeling the slightest bit guilty, and is under strict medical instructions to be nicer to herself.

Signed,

Dr Linda McIver, PhD.

I’m still looking for answers, but maybe first I need to work out what the question is.

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Heart strings

Grief never leaves you. Whether lapping gently at your feet or lifting you up and dumping you hard on the rocks, the waves of grief become a constant in a frighteningly inconstant world.

Sometimes I run from them, investing heavily in life in a bid to drown out the roar of death in my ears.

Sometimes I seek them out, obsessively reading about the grief of others, hoping to find the pieces of my broken heart in the words of strangers.

Sometimes they leap out at me from inside what seemed like a safe and lighthearted distraction.

There’s a lot going on in my life right now, and I am… somewhat vulnerable. So I took refuge in some timeout with William McInnes’ sweet and quirky new book, ‘Holidays’. Which was an excellent move right up until the last four pages, which picked me up and slammed me onto the rocks of grief before I knew they were even there. And then they hugged me, smoothed down my ruffled feathers and placed me gently back into my seat, where I sat, slightly stunned, with tears pouring down my cheeks.

In hindsight they were tears that have been hovering for weeks now. Tears of grief, of fear, of stress. Tears of love, of laughter, and of exhaustion. I knew they were there, but I wasn’t planning to let them out.

Caged tears, though, are as corrosive as flowing tears are cathartic. Far better to have a devious author sneak inside my heart and break open the cage without my consent than to keep trying to pretend the cage wasn’t even there.

There is a kind of camaraderie among the grieving. In McInnes’ book an acquaintance saw his grief and hugged him. I imagine it’s quite likely that this acquaintance has griefs of his own. He knew what he was seeing.

Once, when comforting friends in desperate grief, a fellow comforter looked into my eyes and said “this isn’t new to you, is it?” Grief marks you. It’s a club you never wanted to belong to but can’t possibly leave. But there’s an obscure comfort in knowing, once you’re in it, that it’s not a club of one. That others have been there, are there, and can recognise and even console your haunted heart.

I don’t know how to contact William McInnes, which is a shame, because I would like to be able to thank him. There will be other tears, and other cages, but his book spoke to me today, and they were words I needed to hear.

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How to be a superball

I was lucky enough to hear Hugh van Cuylenburg speak yesterday about resilience. Resilience is the power to recover from trauma. Hugh describes it as the ability to bounce back, but also to bounce forward. To take the setbacks of today and make them the building blocks of tomorrow. To build everything that happens in your life into a new, stronger you.

We’ve all known people who bounce like a superball regardless of the trauma life throws at them. And we’ve probably all had times in our lives when it feels as though the next straw to land on our overburdened backs will crush us irretrievably. At moments like that, resilience seems like something elusive that only other people can have. Hugh’s message is simple and potent: Resilience can be taught. It can be practiced, and strengthened, like a muscle. And it is astonishingly simple to do.

At the risk of oversimplifying several hours of compellingly personal and highly entertaining stories, backed by solid research data, it boils down to three things:

  • mindfulness
  • gratitude
  • and empathy

Most of us live our lives like a kind of electron cloud around the nucleus of the present. We are a blur of thoughts about what happened yesterday, what might happen tomorrow, and all of the things we need to do. We are having arguments in our heads with people based on what we think they might say, and building mental bastions against situations that might never arise. We are everywhere, all at once. Preparing for everything to come, rehashing everything that’s been, and adding in a whole lot of hypothetical stuff that never was and never will be. It’s exhausting.

What is she thinking?

Why didn’t he return my email?

What does he think of me?

How am I going to get through this week?

What if she won’t talk to me tomorrow?

Why did I do that?

Unlike electrons, however, we have the power to come to rest on the nucleus of our present. We can decide to focus in on this present moment. On the world around us. On how we feel. On what someone is telling us. On what is going on right now. Research shows that this ability to be mentally present has all kinds of clear, tangible, physiological as well as psychological benefits.

But like deciding to play the piano, it’s not necessarily something we can simply sit down and do, right off the bat. We need to know the right techniques, and we need to practice them. We need to get into the habit of being fully present, rather than defaulting to being that buzzing, fizzing electron cloud, and only ever noticing the present once it becomes past. The good news is that as little as 5 minutes mindfulness practice a day can help you to live in the moment.

I’ve written about mindfulness before. It was Gratitude and Empathy that really struck a chord with me yesterday. New research shows that writing down 3 good things each day – 3 things that went well, that you are grateful for – together with their causes, can make you happier, relieve depression, and effectively inoculate you against future trauma. It doesn’t mean you will never be traumatised, of course, but it helps you be that superball and bounce back and then forwards, rather than dipping down into depression.

Hugh described it in a way that made a lot of sense to me. It’s as though we all have a level of depression and anxiety. Traumatic life events drop our happiness levels down, and can drop us low enough to tip us into depression. If our depression level is high, it takes less trauma to reach that level. But if our depression level is low, higher levels of trauma will still avoid tipping us into depression. Simply being consciously grateful for 3 things each day can significantly lower that base depression level.

depression, life events, and the impact of gratitude graphed

Gratitude can lower your level of depression and prevent traumatic events from pushing you into depression.

The final point, empathy, is in some ways related to mindfulness. If you are in the moment, aware of your surroundings, you will also be aware of the people around you. It’s only a short step from there to choosing to help them. Actively helping others has been shown time and time again to increase our own happiness. From random acts of kindness to helping out when someone is in a fix, empathy is also a way of building communities, and a sense of connectedness for both helper and helpee. Even a small thing like pausing to give someone directions can materially add to your own well being. There’s just no downside.

I found the research pretty compelling, but I also know that this stuff works on a deep and personal level. I have watched mindfulness and the Thankful Thing change my family’s lives. Sure, some days we forget to do the thankful thing. Sometimes we don’t manage to sit down and make space in our lives for mindfulness. But even though we don’t do it every day, it has transformed us. It has given us coping strategies we never thought were possible before. And even though we know how much it helps, sometimes we need to be prompted to get back to it.

Hugh van Cuylenburg gave us a powerful push yesterday. You can find him on youtube and on the web if you need a push of your own.

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Damned if you don’t, gutted if you do…

I visited my mum today. It’s been a while, what with Christmas holidays and things, but the truth is I postpone seeing her. I dread it. I fear it. It makes me crazy, and it breaks my heart. So I avoid it, delay it, postpone it, find excuses not to do it, until the cascading guilt builds up to the point where I crack, and off I go down the slippery slope of horror that is dementia.

I skip and dance around the usual paranoia triggers, and we have a relatively peaceful lunch, circling around the same two conversational topics on rapid repeat, as we always do, but without any real distress. Her hearing is much worse, but other than that she seems ok.

But then I get careless. Emboldened by her unusual calm, I suggest we should dig out the family slides and photos and get them copied for safekeeping. It takes me a while to get this idea across, but eventually she agrees it’s a great idea. You can never predict what will trigger her paranoia, but it turns out that searching for photos does the trick quite spectacularly.

So I am rummaging in dust and cobwebs, coughing and spluttering, while trying to reassure her that I am not planning to steal anything, and that she will get it all back as soon as it’s copied. Around and around and around and around we go, all the while she is getting more and more anxious. Finally I find the slides and she insists she has to go through the box before I go, in case there is something valuable in there. She is almost in tears, saying she’s not giving anything away, I have to promise she will get it all back at least 15 times before we make it out the door.

That’s when it hits me like a fist in my face. She is terrified. She is trying so hard to hold on to the structure of her life, and I have just accidentally ripped up her foundations. I did something unexpected, out of the ordinary. Her boundaries, never very flexible at the best of times, are now rigid with panic and horror, as she sees her life and her mind slipping away from her. Her grip on routine is the only thing that holds her upright, and I just pushed her over the nightmare cliff.

Her memory for the past is actually improving, oddly enough. I thought it might comfort her to have some photos of the old days, when her life was calm and predictable, and she knew what was going on. But to get there we had to cross the treacherous sea, navigate the fireswamp, and battle the ROUSes(*) of fear and paranoia.

She is lonely – so lonely – but by the time I get home there’s a message on the answering machine saying she hasn’t seen me for ages, when am I coming over?

She is afraid – so very afraid – but trying to comfort her terrifies her, lest we discover there is something wrong.

She is angry – so very angry – but she can’t quite work out why. So she fixates on something. Something she has lost, or something she imagines someone has done. And denying it only enrages her further.

By the time I get home she might have forgotten it altogether, or she might be working herself into a frenzy of rage. We might be about to receive a barrage of phone calls demanding the slides back instantly, or she might never mention them again. The uncertainty is almost the worst part. Except that the screaming is the worst part. And the fear. That’s the worst part, too. Dementia is a whole morass of worst parts.

As for me, I’ve arrived home shaken, and shaking. My heart breaks for the child behind her eyes, who wants to be held and told it’s all going to be ok, except that the paranoia won’t let her admit it. My heart breaks for the fear she battles every day. Fear that she will be hurt. Fear that she will be abandoned or taken advantage of. Fear of being in the world, and fear of being left out of it. The same fear that she uses to protect herself, and to drive people away.

And my heart breaks for me. I want my mum. And she’s long gone.

(* ROUS – Rodents Of Unusual Size. If you didn’t recognise this acronym go watch The Princess Bride immediately)

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