Transfixed

The first time I tangled with death I was struck by the way the world continued to turn. People worked, played, and laughed while I stood immobile, transfixed with horror and loss. My stomach churning. My heart stopped. My life irrevocably shattered – its reconstruction would take years. Yet my neighbours went to work and tended their gardens. The weather was beautiful, heedless of my pain. My friends gathered around me, but they still had lives to live. Things to do. Practicalities to attend to. For me, time had stopped.

Today is no surprise. Her loss has been imminent for weeks. Relief rises in waves because her suffering is finally over. But it hurts. Oh god, how it hurts. Less than 24 hours from her last breath I miss her humour, her bluntness, and her love. Above all she wanted to make sure she wasn’t a nuisance. Surrounded by tales of people having to force their elderly relatives into a nursing home she chose to go, when she was ready – not because she wanted to, but because she wanted to spare her loved ones the trauma, and she knew the time was coming when she would not be able to manage at home.

She did everything on her own terms, but death was not kind to her. It took too long to come, and made her suffer in the waiting. I don’t know what she would have chosen, if she had a choice, but with all my heart I do believe the choice should have been hers. She was dying. She was suffering. Why could she not choose to go gentle into that good night, with the kindness of morphine, instead of suffering night after night, dragging herself and her loved ones through hell with every struggling breath? This is no slippery slope, this is the deliberate withholding of compassionate treatment. This is calculated cruelty for ideological ends.

hey there’s not a cloud in sight
it’s as blue as your blue goodbye
and I thought that it would rain
the day you went away

Wendy Matthews, The Day You Went Away

She was a troublemaker, Marg. One knows another, and we fired a spark in each other that burns brightly in me now. She told me wild tales of growing up with my Dad and his brothers. Through her I saw a side to my Dad that he never chose to show me. I learnt more about my family, and my background, from Marg than I sometimes think my Dad ever really knew.

Marg was always part of her community, even as she spent more and more time in hospital with a failing heart. Her neighbours all adored her. Whenever I visited there would be people popping over the fence to see how she was doing. She used to introduce me as her niece – which technically I wasn’t, as she was Dad’s first cousin, but I took some pride in it. She was certainly an aunt to me, and much, much more.

We talked often, Marg and I. She raved about her grandchildren and great grandchildren. She loved them to bits, and delighted in their spirit and will. Never one to sit quietly and do what she was told, Marg connected best with independent spirits, and she related tales of her spirited descendants with glee.

I always knew I could trust Marg to tell me exactly what she thought, even if it was hard to hear. But even when she disagreed with me, she was in my corner come hell or high water. Marg did what she thought was right, and damn the torpedoes. She loved with her whole heart, even as it failed her.

We’re a funny old family. Widely scattered and curiously distant, Marg was a crucial link between my past and my future. She is a piece of my heart, now and forever. I’m glad she’s at peace – for the last week I was begging fate to let her die, to release her from suffering – but I am gutted that she’s gone. I can hear her saying “I’m not special!” but she is incredibly special to many.

The way I see it I was lucky to have Marg in my life. She was a huge and loving support to me. If grief is the price of love, I pay it willingly. But it hurts.

 

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Judgement Day

Human beings are really good at making fast judgements, but not very good at making them accurate. Let’s face it, in an evolutionary sense running away from a potential sabre toothed tiger is almost always a good idea. Better to run away when it turns out not to be a tiger, than not to run away if it actually does have teeth, claws, and a big appetite.

But sometimes those snap judgements can land you in hot water. Like when you decide you can trust someone and turn out to be horribly wrong. Or when you assume the worst of someone based on a chance meeting on a bad day.

Most of us take the judgements of others to heart too, even when we know they’re not based on fact. When somebody talks you down endlessly, it’s pretty hard not to believe it. That can be countered by some positive feedback, but positive feedback isn’t always around right when you need it. We’re more inclined to complain, as a species, I think, than we are to praise. And the bad stuff is also much, much easier to believe. It has been suggested that the ideal ratio is 6 positive comments to 1 negative, and how often do we deliver that kind of ratio ourselves, much less hear it come back to us?

What fascinates me is the power that unfair judgements have to get under my skin. Even if they’re not public – say, sent in a grumpy email or made face to face – they sting. I feel a visceral need to correct them. To fight back. To find a way to somehow wipe my life free of this corrosive attack.

But lately I’ve been thinking about that. Because fighting back invariably leads to a whole new level of toxic interaction, so even if it is temporarily satisfying to lash out, it’s really not going to improve my life. And arguing, however calmly and carefully, with someone’s judgement of you is incredibly unlikely to produce a change in their opinion.

So what on earth can you do? Turning the other cheek may be the biblical solution, but having one cheek stinging and even bleeding already, I really don’t feel like offering the other up for the same treatment. There’s not much incentive to say “Oh yeah? YEAH? Well tell that to my other cheek!”

Maybe there’s a different way. Maybe what I need to think about is the sting itself.

One of the reasons I write is to form connections. When I wrote about Mum last week I got a lot of beautiful support from both friends and strangers. At work I was heading down to the tea room when a colleague called out to me. I stopped, and she caught up and gave me a huge hug. She knew something about me, from what I wrote, that she hadn’t known before, and it prompted her to reach out. It was a moment of beauty in a really tough week.

The interesting thing about those connections is that they can become support structures in the face of those unwanted judgements. I am my own harshest critic, so when others tear me down my first instinct is to agree, and to collapse into a pit of self-loathing. Now I take those moments of beauty and hold them up against the bad stuff.

I save any positive feedback I get at work. The lovely emails from students and their parents. The off-the-cuff comments that give me a lovely warm glow. They all go into my positive feedback file, which I then go and read when I need an antidote to negativity. And the moments of beauty like the responses to my blog – the hug on the stairs, the email from a friend, the comments on facebook – they are also things I can turn to, like a balm that relieves an insect bite, to take the sting out of judgements I know to be unjust.

It turns out that I don’t have to collapse under attack. If I can’t trust my own self-judgement, I can turn to the judgement of people I love, respect, and trust. I can ask myself “Is that what my loved ones would say?”

It’s not easy . When judgements are hurled at you like a knife, they do cut. But there are salves for those cuts. At those moments when we’re bleeding, it turns out we have a choice. We can keep opening the wounds, or we can choose to help them heal. After we stomp around a bit, shouting and swearing. Sometimes you have to scream and throw things before you can act like an adult.

Surrealism, dementia style

You know what they don’t tell you about dementia?

Well, actually, nearly everything. But chief among them is how incredibly surreal it can be. I was at a cafe with Mum today. And it was fine. I was showing her photos from our holiday. She seemed to recognise my daughter, who was hanging out with me today. And as we chatted she turned to me and said “You can do the maths. How long have we known each other?”

It doesn’t matter how often this kind of thing happens, it’s impossible to get used to it. I stared at her for a moment and she said “I mean, I know we’ve known each other for a long time. When did we meet? And where?”

All the dementia literature says not to burst the bubble. Just play along with their reality. So I said “Well, it was 44 years ago,” hoping she would let it go at that. She exclaimed over how long we had been friends and then said “So where did we meet?”

I wasn’t sure whether to burst out laughing or put my head on the table and howl, so I said “we met at the hospital,” thinking that perhaps she would twig. She looked puzzled and said “did I come to see you did I? That was nice of me.”

I agreed it was indeed nice of her, while my heart quietly shattered. But she hadn’t finished with me yet. “Well hang on, you were in hospital, how did we actually meet?” oh yes. Nice time to use logic, Mum.

“We were in hospital at the same time.”

“Wow. That’s amazing”

“Yes, yes, it certainly is. I am amazed.”

It’s hilarious, really. Except it punched out my heart. That’s surrealism for you, I guess.

Half an hour after I got home she called me to ask when she would see me, it’s been so long.

When you feel my heat
Look into my eyes
It’s where my demons hide
It’s where my demons hide
Don’t get too close
It’s dark inside
It’s where my demons hide
It’s where my demons hide

They say it’s what you make
I say it’s up to fate
It’s woven in my soul
I need to let you go

Your eyes, they shine so bright
I wanna save that light
I can’t escape this now
Unless you show me how

Demons, Imagine Dragons

It’s not like this is new. She has forgotten me before. But the human brain, pre-dementia, is surprisingly resilient. It bounces back to its base state whenever possible. And regardless of how fractured, how flawed my relationship with my Mum has been, the base state of my brain is heavily influenced by that most primal of relationships: parent to child.

And that relationship was like two ropes. One from her to me, one from me to her. God knows those ropes were sometimes more like barbed wire. Sometimes they were so tight it was painful, while at others they were so thin and loose as to be almost undetectable. Ultimately, though, they were always there. But now her rope to me is unraveling. In fact that’s probably a lie I’m telling myself even now. Face it, it has unraveled. Evaporated. Gone.

I don’t know why that hurts so much. Her remembering me was usually pretty traumatic. When Dad was still alive their “remembering” moments usually involved threats of legal action, or screaming down the phone. But I still feel shocked and sick every time.

She still knows she knows me. But she doesn’t know who I am. There is no doubt a day coming when even that last flash of recognition will be gone.

I spent the rest of the day doing what had to be done. I drove home. Did the shopping. And halfway back from the shops I suddenly sobbed hot, desperate tears. It will only get worse from here. And I’m not sure I can do this anymore.

 

Lonely in a crowd

Locals have left tributes for murdered West Heidelberg toddler Sanaya. There are outpourings of grief and rage, and messages to Sanaya from people she never met. While I understand how crisis brings people together, and sometimes it takes a shock to draw attention, it saddens me that Sanaya’s mum, now accused of also being her murderer, was described in the media today as having 1000 Facebook friends, but no-one in Melbourne she could really talk to.

It feels to me as though we are very good, these days, at signing petitions, attending vigils, and leaving offerings at the scene of crimes. But we’re not so great at drawing isolated people into our community.

We drive to and from huge, impersonal shopping centres without seeing a familiar face. We drive to and from work. We don’t know our neighbours. All too frequently we don’t even socialise with our work colleagues. We’re too busy to put down roots, to know our community, and to see the loneliness on the faces around us – in fact we’re often too busy to see the faces at all.

And some of those faces are struggling. Lonely, isolated, or even trapped in abusive relationships, we give them total privacy, when what they need is a hand stretched out.

My students will tell you I’m not a fan of the Facebook attitude to privacy, but sometimes I wonder if it would be better if Mark Zuckerberg was right and privacy really was dead. I think we venerate it too much. I think we are so concerned with each other’s privacy that we sometimes fail to reach out.

We build fences, create higher walls, and plant screening hedges so that no-one can breach our defences, but maybe it’s our defences that are killing us.

I’m really lucky. I have an incredible collection of friends. We catch up with each other, but frequently need to schedule catch ups weeks or months in advance, because life is so busy. Just dropping in is a luxury we can’t afford – often because we don’t live close to each other. Community is no longer the people around you. That means we can choose our friends, and it’s easier to stay connected with the people we love even when they live on another continent. But it also means that the people we walk past every day are often not people we connect with.

It means when you’re having a rougher day than usual the people around you won’t necessarily notice or care. And it means that when you’re like Sanaya’s mum – struggling and lonely – there may be no-one around you who will smile and reach out a hand. It turns out that we were great at giving her privacy, but not so great at giving her community.

I worry about our future. Online communities can be wonderful, but they don’t see you walking past. I get a lot of support from my Facebook friends, but they can’t pick me up if I fall down in the street. If I couldn’t post for some reason, I doubt my Facebook presence would be missed for quite some time. Reaching out, whether on Facebook or on the phone, is really hard when you are feeling raw and vulnerable. Sometimes you need the people around you to notice.

Of course, it’s not easy to reach out to total strangers, and I don’t know what Sanaya’s mum’s story is. Maybe people did reach out. But I do know that I don’t reach out enough to the people in my own life. There are so many small ways we can keep each other from falling, and I think I could do more.

To check in with friends at work who have been absent for a while, to see if they’re ok. To stop when I see someone is upset, and ask if there’s anything I can do. To arrange more coffees. To send more emails – or better yet, make more phone calls. To really listen when I ask someone how they are, and not just take a quiet “ok” for an answer. To put a flower, a chocolate frog, or a cup of coffee on a friend’s desk when they’re struggling. To take the time to be really appreciative when someone does something nice. Even to admire a new haircut. Just to connect.

Sometimes we all fall through the cracks. Some land harder than others. Wouldn’t it be great if we could all do a little more catching?

 

Letter to my teenage self

At 44 I’m still a work in progress. I had a pretty rough time socially, as a teen, although once I got to uni things improved dramatically. But there’s some stuff that took me so long to work out, it’s just embarrassing. Some of it I know intellectually but really struggle to apply, other bits I am still coming to grips with. So in writing to the teenage me, I’m also reminding a 44 year old who really needs to learn to stand up for herself. Maybe one day she’ll listen. This is a list of the stuff I wish someone had told me when I was a teenager. Or indeed anytime in the last 44 years.

  1. Being different, thinking differently, and acting differently are the things that are singling you out and getting you teased as a teen. But these same traits are huge advantages once you grow up. If you can think clearly about it (which I know is a challenge through the fog of shame, guilt, and anger that teasing makes of your brain), all those people who happily follow the herd aren’t going anywhere new or interesting. People who think so far outside the square that they don’t even know where the square is – those people will change the world. Outside the normal is where you find opportunities, new perspectives, and solutions. It’s where you want to be. It gets better here.
  2. Your own judgement of your actions is what matters. Don’t let anyone else dictate to you how you judge your own behaviour. Ask yourself whether you did what you believed was right, and treated people the way you would like to be treated. If you didn’t, then do your best to make amends. But if you did, then you have the right to defend yourself. Which brings me to point 3:
  3. Defending yourself assertively is not an act of aggression. There is a difference between calmly stating facts, and attacking someone else. Learn to defend yourself and make the truth clear. Sometimes this means taking a deep breath and thinking calmly about the situation before speaking. That’s ok. No-one has a stopwatch out, and one deep breath can completely change the outcome. Sitting quietly and allowing yourself to be slandered in the name of “not causing a fight” will not end well for you or for anyone else. Learning to speak out before you either explode or give up (or both) will make your life immeasurably happier and more successful in the long run. Even if it hurts like hell in the short term.
  4. Sort out your own behaviour. Don’t waste time judging other people’s actions, or wishing they treated you differently. You can’t change someone else, but you can certainly change yourself and how you respond to them. Look at how you handle situations, and consider how you could do better next time. There’s nothing more potent than learning from your mistakes. Fortunately there will be plenty of learning material in your life! Also, a little compassion goes a long way. Remember that you never know what’s going on in someone else’s life, so cut the people around you some slack.
  5. Admit it when you don’t know stuff, and value the stuff you do know. Trying to bluff your way through not knowing something only ends in embarrassment at best, disaster at worst. But when you do know stuff, be confident and stand up for yourself and your skills. They have worth. You have worth.
  6. Speaking of worth, it lies in what you do, what you know, and how you treat people. Never in how you look, what shape you are, or whether you shave your legs. Never. Wear what feels good and makes you happy, and damn the torpedoes.

I think that’s enough. If you can live by all of that, then things will mostly work out. But don’t forget that you’re not perfect, and also that there will be rough patches you can’t control. You are loved. Don’t forget to allow yourself to lean on that love. It will save your life.

 

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.

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.