This website is focused on my writing. On it you will find my articles, plus links to my books and research.
I investigate creativity, innovation, and resilience. as well as writing creative non-fiction, I also do this by facilitating discussions, storytelling sessions, interviewing people, and delivering workshops.
This week – 24-30 May – is Palliative Care Week. As a family member of someone who received palliative care, I have written this blog in tribute to palliative care professionals.
They put her in her prettiest nightie, the palliative care nurses, even though I had told them that the body would not be viewed. They took off the nightie she had died in, washed her, and re-dressed her in the one with the little flowers around the neck, and brushed her grey wavy hair into neatness.
“We couldn’t do anything about the mouth,” they said, and we all fell silent for a moment while regarding it gaping open, displaying old teeth and gums for all the world to see. “That’s OK, “I said, because all the world wasn’t going to see it, just me and those two nurses, and a few other people. According to her wishes, Mum’s corpse was to be afforded privacy – no viewings at the funeral – only to be briefly touched by the unavoidable utility of being examined by her GP in order to pronounce death, and readying for cremation by the funeral directors. The fact that the nurses had washed her, dressed her in her best nightie, and brushed her hair would’ve meant a lot to a woman who had always been insecure about her looks and who, correspondingly, took refuge in little harmless physical vanities. Not that the nurses knew that; they never really got a chance to talk to her.
Mum died sometime in the evening of Friday 19th May 2019, having spent 3 days in the palliative care ward at Mercy Health in Albury. I had chosen to camp out by her bedside, for my own sake as much as hers, while other close family members visited or rang. We had briefly tried nursing her at home, but the awful symptoms of a person dying simultaneously of kidney failure and Leukaemia – both physically and psychologically distressing – had defeated us. We could not make her comfortable. Palliative care had always been Plan B, and Mum was able to confirm, in one of her last few episodes of lucidity during that final dreadful week, that she was ready to go into the ward.
I was fully confident of Mum receiving efficient and appropriate medical care, and further impressed by the combination of kindness and expertise shown by the visiting nurse from the community palliative care program, who coached us in nursing her at home. So I was reassured by our joint decision to move her into palliative care, expecting that she would be more comfortable there.
And she was. The drugs they gave her took the pain, nausea, restlessness, and hallucinations right away. Too weak to even talk on her last Friday morning ever, she soon slipped into a sleep that was complete in its stillness. She died, peacefully – and I was there to see her last quiet breath – on Sunday evening.
So, medical efficiency I expected. But what struck me, and what I am profoundly grateful for, was the gentleness and dignity with which the nurses treated her poor dying body and, therefore and by extension, our poor frazzled minds. Such was the insensibility of Mum in her last prolonged sleep, such was her utter inability to be roused, that anyone could’ve played noughts and crosses on her bare naked flesh and she would never have known or stirred. But the nurses explained gently to her unresponsive form what they were doing as they cleaned and medicated her, and touched her tenderly in their ministrations.
In her article The inconvenient truth about dying,Sarah Malik explains that not everyone gets to die peacefully; some poor people’s symptoms are such that a complete absence of suffering is just not achievable. We were very lucky that Mum’s symptoms were able to be mitigated by the massive cocktail of drugs administered in palliative care. We knew that she was not suffering in any way. But we were also able to witness a level of care that not only tackled physical anguish, but also manifested a compassionate regard of the person Mum had been while alive. The nurses didn’t know this person at all, but they accorded this rapidly dying piece of flesh the dignity and consideration that every human being wants while they are alive.
In the absence of having to nurse Mum ourselves, we were free to adjust to the idea that she was soon to be gone, to start to grieve, to talk to her silent form one last time, to just be there.
After Mum exhaled her last ever breath, I sat there in disbelief, waiting for the next one. I waited for minutes. Finally, I rang for the nurses. They explained what was going to happen next, then the three of us stood looking at the poor body. One of the nurses reached out and squeezed Mum’s dead knee underneath its white hospital blanket. “Aw, Jenny,” she murmured. We a conferred about practicalities a little more. And then she did it again. “Aw. Jenny.”
We left Mum’s remaining clean nighties at the palliative care ward, and dropped off a few more: the nurses had mentioned that some patients did not have families to launder and bring in fresh sleepwear for them. I don’t know if this was a helpful thing for us to do or not. I felt like making a gesture, but I knew not what. Not that any was ever expected.
“The idea of being forgotten is terrifying.” So writes Susan Orlean in ‘The Library Book.’ And I think this is probably true for most people.
But, as a bereaved person, the idea of forgetting is, for me, equally confronting. During the stress of experiencing my mother’s active dying and then death, my memory started playing tricks on me. I was uncharacteristically good at remembering dates during this ‘adventure’: diagnosis 1 April 2019 but she told me on the 12 April 2019, death occurred 19 May 2019, funeral 23 May 2019… but I am less successful at remembering times. I know she died in the evening of 19 May 2019 while I sat beside her watching a superhero movie, but I forget at what time exactly.
The experience of camping out in her palliative care ward felt so vivid, and my senses so heightened, that there are certain things about that place that I thought, when I experienced them, that I would never forget, but which faded from sharply defined episodes to faded jumbles with surprising rapidity after I had left there.
Years ago, we saw Sleepless in Seattle – a film she loved – for the first time in each other’s company. I am absolutely clear about that. But I forget whether or not we saw it in the cinema or on telly, and whether or not any other friend or family member was there with us. In that film there is a scene where a small boy tells his father that he is starting to forget what his dead mother looked like. I have read that this is the case for other bereaved people too.
I don’t want to forget her. I don’t want to forget the things I loved about her: her mad violent laughter, her childlike and often comical expressions, her power with words, her urgency of emotion. She wasn’t an easy woman, with difficult qualities rubbing up against the joyous. So it feels important to hold onto a memory of that beguiling side of her now that I do know that there were things I genuinely loved about her, now that the relief of the absence of her unjust demands and sometimes cruel game-playing has cleared space for me to figure out what I actually feel about her.
It’s equally important, too, not to forget the bad stuff: the tantrums, the whiplash volatility that was so disorientating to experience, the constant grabbing for attention and endorsement that was so exhausting. Now that my family and I have time to draw breath and actually reflect, we need to gauge exactly what that woman took from us and what she gave, and what the imbalance between those things was, and how it has shaped us. To do this – to reclaim our sense of self – takes accuracy of perception so that we can carefully weigh all this up. To find this accuracy, while being hit by waves of grief-elicited emotion like sadness, relief, anger, requires a good memory.
Then there’s an accepting of the things about my mother that live outside the realm of memory because they were the things I never knew about her. What did the core of her look like, I often wondered, for her to behave in the way she did? Was it a heaving broiling mess of emotional lava? Or was the frantic psychological shape-shifting and spell-casting a front, protecting a core that was empty? I always knew she could never tell us because she didn’t allow herself to know. Whatever she sensed was in there was something she was too terrified to look at.
For the last three days of her life, lying deadly still (there’s no other way of putting it) in the palliative care ward, Mum didn’t wake up. We called it sleeping, but, such was the level of unresponsiveness, I suppose it was a coma. During that time I kept vigil, over my own reactions as much as her unmoving form, and offered a few last pathetic tendernesses: I spoke to her uncomprehending head, told her she could go, that we would be alright, blah blah blah, all the stuff you’re supposed to say. I recited a favourite poem, and described a beautiful late-autumn dawn, the cockatoos and trees outside her window. She loved words, plants and birds. I shoved little chips of ice into her slack mouth until it gaped and then stayed open and couldn’t retain them anymore.
And I touched her hair, like a parent brushing the hair of a child. Mum had often had a tendency of behaving like a toddler, forcing myself and my sister, often and reluctantly, into quelling her fears and nudging her out of her outbursts like older siblings or parents. My earliest memories are of doing this.
Because this responsible behaviour was compelled, and not reciprocated, it made me reluctant to freely offer as much tenderness when I might have, as much as I tried to remain good friends with her. I was loyal, said the right things, and hid the right secrets. But there was no room for voluntary gentleness in the middle of Mum’s psychically violent world; the best I could manage was determined good will.
But in her last sleep, when she no longer had the power to try and control the doing of it, I touched her hair. I don’t know why. It was out of instinct. Her hair was naturally wavy, and a lovely grey. Given the buoyancy and naturalness of that wave, and the thickness of each individual strand, I expected her hair to be stiff and harsh in texture. But it felt gloriously soft, silky, almost baby-like. If I had not given into that instinct, I would never have known.
This blog has been inspired by some jottings I made in my journal last year, and which I just came across while I was tidying up my laptop:
I woke up this morning at 4.13am, which is way too early. I lay in bed and thought through all the day job stuff I had to do that day – the emails to be sent, marking those assessments, following up on paperwork, preparing for a meeting. Then I thought about how much I wanted to carve out some time for my writing, and resolved to do it. Then I felt worried about how I was going to do all of this.
My journal goes on to explain that I wasn’t worried about fitting all of that stuff into the day. I had oodles of time, especially by waking at 4.13am. I was worried about energy. I worried about fulfilling my tasks and errands with accuracy, and without forgetting something or making stupid mistakes. I wondered how I would feel by the time I got to do my writing in the afternoon, usually my peak creative time. I dreaded sitting down in front of my laptop to do the thing that meant the most to me and feeling like I had a head full of cotton wool.
You might have the time, but do you have the energy?
As a society, we talk endlessly about time management. Why don’t we talk about energy management instead? It’s all very well to do as all of those self-help books advise, and set your alarm for 5am each morning and then haul your sorry arse out of bed to do your writing. Or, like so many creatives I know, to set aside a couple of hours aside after 9pm each day to work on your projects. But if your days are otherwise split between working a day job, parenting, caring, jumping through hoops for social services, running a household, or a combination of some of the above, then how are you going to feel at 5am or 10pm? Where are your energy levels going to be? What is your ability to focus going to be like? Are you going to be clear headed or foggy minded? Is your imagination going to be firing ideas at you or are you going to be distracted or numbed by the burden of workaday worries?
Even worse, what if the cumulative exhaustion of cramming creative work in and around other responsibilities sets up a pattern of you resenting that creative work? What if instead of being the thing that inspires you the most, your creative project turns into the thing that leeches the precious time you need to rest and relax?
Poisoning the well.
Right now, many of us are leading a weird new existence due to the pandemic and its associated lockdowns. People are surprised at how tired they feel, at how the constant hum of stress, uncertainty, and tedium in the backs of their brains or roiling in their guts eats up a lot of their energy – mental, emotional, and even physical. Time management is still a challenge for a lot of us, but in completely different ways to what it was before.
There are opportunities, of course. Depending on the conditions you are working with, you may have the chance to disrupt and change priorities, routines, or habits. You may be able to access more time and energy for creative work. And, if so, that’s great. But if you are finding that you are grappling with exhaustion, and therefore a resulting dip in inspiration or energy or discipline, then your opportunity is of a different sort. Put simply, your mission, if you choose to accept it, is to figure out how to protect your own love for the creative work that means the most to you.
What do you have to get rid of, or say no to? Where do you have to compromise? What other activities that are demanding that you use up your energy can you jettison? What do you have to give up on?
The old standards and expectations should no longer hold sway. Don’t let your creative work feel like just another obligation, sitting alongside others that may have little meaning for you anymore. Render unto Caesar that which is Caesar’s – do the stuff you really must – but get rid of everything else, and reclaim your energy for the things that give meaning.
Are you wondering why lockdown is making you so tired all the time? Read this article to find out why.
I derive my income from a mixture of casual and freelance work. If you would like to support me during these precarious times, please consider one of the following:
At any given moment, approximately 1-in-4 US workers is experiencing grief of some kind. The Grief Index Study captured data from 2,500 people over decades. A quarter of people you work with & manage are dealing with a death, separation, illness or tragedy right now.#Empathy
I’ve spent most of the last 12 months feeling like a moron: struggling to concentrate, to learn or take in new information, to make good judgement calls, to trust my memory.
My “year of now done darkness” contained the suicide attempt of a family member, which was shortly followed by the news of my mother’s diagnosis with cancer, and that was followed – with shocking quickness – by my mother’s actual death.
The rest of the year was bullshit: the worst kind of workplace politics lead to me being the target of bullying, which kicked in not three weeks after poor Mum’s funeral. Various other snafus and stoushes bookended all of the above. None of these smaller dramas were as hard hitting as the bullying, or the near or actual death of people I cared about, but all served as a further drain on my resilience.
In amongst all of this I started a new contract. News of the suicide attempt came just two days before my induction. I went in pretending I was in Happy Camper mode but, in reality, I was in a flat spin.
Every time I went in to deliver training, I thanked God for my earlier experience as a performer: the show went on but, behind my professional exterior, I was a wreck. It was a year of sadness and anger, of insomnia, of disproportionate physical fatigue, of disorientation, of not being able to retain information and having to rely on cheat sheets and palm notes (which I couldn’t read anyway because the words swam in front of my exhausted eyes). But somehow I scammed and improvised my way through.
I had to pretend to be cheerful in front of people although, God knows, I tried to avoid as many of them as I could. I acted as if I were calm and sociable and competent when, in actual fact, I knew myself to be a misanthropic cretin who couldn’t think my way to the end of a sentence. I was manky in intellect and spirit. And this was valid. How else could I have felt after being exposed to other people’s malice, or despair, or death?
But I lived in a world that needed me to be otherwise. And, if I wanted to leave my home to earn money to pay rent and buy food, which I vaguely understood that I needed to do, then I had to go out into that world and pretend that I was what it designated as ‘OK’. Whatever that means.
On with the motley. The show went on.
But this meant that I didn’t actually behave authentically unless I was at home all by myself, in which case it was OK to stare blankly at a wall, forget to eat, or cry into a pillow. Which meant that I felt like I was faking it every time I walked out the door. And that was actually what I was doing. Which meant that I was an impostor, a dishonest representation of another person – a happy, organised, palatable person.
Articles abound earnestly counselling us all to defeat our impostor syndrome – that furtive but insistently treacherous voice living in our heads that tells us that we aren’t really as good as others think we are, that our incompetence will be exposed any minute.
But when you are in grief, this voice is not treacherous as much as realistic. For most of last year, underneath my bonhomous and tidy exterior I was living as a crazed mess. How I functioned I don’t know.
Living with grief means living with many and varying moods, thoughts, and energies. It’s all a part of the necessary adjustment process that grieving affords. But because our society demands that we behave in ways that run counter to this adjustment process, being in grief also means that you live as an impostor, divided from the core of your authentic grieving self.
Many years ago I used to listen to a regular show on ABC radio that featured a lady who was expert at interpreting dreams. I think her name was Quentin, and I think the program was on a Monday morning. Anyway, people used to ring in, describe their dreams, and she would interpret the symbolism. The dreams and their interpretations were fascinating and the show was lovely. But, close to nearly two decades (must be!) later, one dream lingers in my memory because the interpretation was so startling but also satisfying.
A woman rang in and said that her dream featured a vampire who had raped her. Sounds grim, yes, but what really worried the woman was that, in her dream, she had had an orgasm during the rape despite being distressed by the violation.
The dream expert’s interpretation was that, no matter how bad the situation this woman found herself to be in, or how exploitative the people she was dealing with, the orgasm symbolised that she always managed to extract something of value for herself from the situation. So rather than being a nightmare or an indication of some kind of unhealthy pathology, the dream symbolised that this woman was one hell of a survivor. I hope, for the sake of this caller, that this was the case, anyway.
Our current situation – the invisible surge of the pandemic, facing our own inner demons during self-isolation, sociopathic ineptitude on behalf of some of our politicians – might have a nightmarish tinge to it for some of us. I’m not advocating feckless selfishness – we owe it to our communities right now to do the right thing: stay at home; wash our hands; don’t spread misinformation; be kind and patient to each other. But do go looking for opportunities for indulgence, pleasure, fun, even if brief or simple or odd. I think we have to be like the dream lady described above: even if we fear this thing might be sucking the life blood out of us, we need to find whatever value we can extract for ourselves.
Twitter right now is a double edged sword. On the one hand it is full of hysteria and nonsense and prolonged exposure to this is definitely not recommended for peace of mind, but on the other it is full of lovely things. In response to the pandemic of physical distancing and isolation that has spread across the globe, many people are taking refuge in their imaginations. The stuff people are sharing range from the silly to the playful to the beautiful to the profound.
August institutions are sharing their resources online: you can read fine essays or view galleries from the quarantined comfort of your home. Author Robert MacFarlane is conducting a reading group on Twitter.
Under these stressful conditions people are trying to find a way of staving off tedium and the blues. They are looking for meaning. Endeavouring to comfort and entertain themselves and others. I think it’s delightful that so many people are hunkering down with a sense of playfulness and / or an appetite for the artistic.
Obviously, for many people thrown upon their own inner resources to combat one of the most disruptive and serious crises of our lives, the instinct they are drawing on is their sense of creativity. I’m not surprised. I have long felt that creativity and resilience work in a kind of a loop. We are living in strange times that demand resilience, where we are challenged to make sense of, and outlast, the hitherto unexperienced. And to do so in a way that means we emerge from this with some sense of being coherent humans able to rebuild normal lives, whatever that ‘normal’ turns out to be.
Working creatively is psychologically challenging in different ways. You have to be prepared to risk failure. You have to be prepared to risk succeeding on your terms, only to have these terms misunderstood and denounced by others. Making creative work is an alchemical process, combining themes, ideas, techniques, resources in a process of trial and error. Creative people get used to working while feeling doubt, frustration, ambiguity, disappointment, and fear at their own audacity.
So creative work demands resilience, that ability to persevere while being vulnerable.* But the neat thing is that, while you are drawing on your personal resilience as a creative, your creative process is embedding things that, in turn, make you resilient. A rich inner world; learning to get your critical mind to work with your imagination (instead of letting one overwhelm the other); the ability to sit in uncertainty; the ability to learn from your mistakes; being able to recognise when a change of course is required; a sense of playfulness; determination; curiosity. All of these things may be called upon when steering a light bulb moment to tangible outcome. All of them can feed your ability to be resilient. And that resilience helps to sustain your creative process.
“Grit and resiliency, when misunderstood, lead to this notion that I’m supposed to suffer, and that there’s something noble in the suffering. That’s silly and actually creates all sorts of problems. There’s a notion of false grit, which is kind of brittle, where if something truly difficult happens to us, we tend to break…. True resiliency, true grit has the capacity to be flexible, to understand that even the worst situations are, to use a Buddhist term, workable. That is, I can learn from this experience. I can find some greater sense of connectedness and therefore grow from this. And by the way, it hurts. And to deny that it hurts is to deny my humanity. ” ~ Jerry Colonna
‘Resilience’ is a word that is all too often misunderstood or misapplied, in my opinion. I am sick and tired of seeing it used as a synonym for tough or gritty. In my experience it is something quite different.
The distinction is an important one in my mind, and is something I became aware of through my own lived experience. I do not consider myself to be particularly tough. There have been many times in my life when I have felt fragile, tender. Many times I have behaved like a softy, when I have been squeamish and cringing in response to nasty occurrences.
But I am resilient. I am the most resilient person I know. I always come back. I have so often seen the amazement on the faces of friends and colleagues when I recover from something that should have seen me down for the count. They are all the more bewildered by my feats of recovery because they know I am not tough.
Many years ago, and there can never be too many years between where I am now and this experience, I was suicidal after a long, disorientating, and debilitating bout of clinical depression. I had the note written. I had my room cleaned, ready for my landlord to take possession – I didn’t want to put him to more trouble than I could help. I went down to Melbourne Central train station and stood on the platform and waited for a train. It came. I didn’t jump. It passed by. I waited for another. I didn’t jump. It passed by. I repeated this a few times until my feet, acting of their own accord, turned around and walked me out of there. I repeated this for a few more days. Then I stopped. I hated myself for a coward. I didn’t even have the guts to do that thing right.
In time the pain passed. I don’t know why or how but it did. I could make no sense of anything. But I was still, somehow, here.
I spent years wondering just what the instinct was that made me stand still on that train platform. When I tried to talk about it to other people – to reason out what had happened to me – I found I wasn’t believed – that my story was brushed off as an exaggeration – so I stopped talking about it. I know I was actually close to dying. I also remember that I had not experienced any last minute epiphany to help me ‘see the light’ and lead me away from disaster. With apologies to my family, I didn’t consider them because I didn’t think I would be much of a loss to anyone. Anyway, I was in too much pain to think coherently and of consequences. I just wanted to stop.
I didn’t make myself stay alive because I was tough or brave. As I stood on that platform there was no squaring of my spiritual shoulders, no plucky aphorisms pinging around my disordered head. I walked onto that platform broken by pain and I walked off it, unaccountably alive, broken by pain.
I was nothing. Anything hopeful, strong, noble, inspired, joyful had long been stripped off me. I couldn’t even remember what those things felt like; they happened to other people. I didn’t have a reason to live, I just didn’t die.
A couple of years ago I realised what it was: this innate quality that didn’t feel like strength but which had kept me being, not choosing not to be, to paraphrase Gerard Manly Hopkins in one of his Terrible Sonnets.
The thing that kept me alive was resilience. And here is why resilience is different from toughness: everybody has their breaking point, even tough people. In fact, find a tough person’s Achilles’ heel and they can be surprisingly brittle. I have known gritty types who looked awesomely staunch through many hard experiences and who, one day, when things had finally overwhelmed them, had fractured spectacularly. Everyone has a breaking point. But resilient people keep going even after they are broken. They mightn’t be happy, they might keep going as a tear-stained hyperventilating snotty-nosed mess, but they keep going.
In these ‘Solitary mind’ blogs I use the word ‘resilience’ from time to time; I wrote this because I wanted to make clear what I, personally, mean by this word.
We are all being challenged by the effects of the Covid-19 pandemic: the concerns about health, anxiety over the state of the economy and our ability to earn, the grinding tedium and, perhaps, loneliness of self-isolation. Over the next few months – maybe even longer – our resilience will be tested. In being shut up in our homes with our own selves, we are about to find out what our own personal resilience looks like (hint: it differs from person to person).
Choosing to be positive, on the days when we have the energy for that, is fabulous. Highly recommended! And, hopefully, for those of us who don’t have to freak out about adverse home conditions (poverty, domestic violence, actual illness), it may be possible to, at times, actively enjoy ourselves by making a point of sleeping in, binge watching stuff on DVD or Netflix, or curling up with a good novel.
But on the days when you feel fragile, unhappy, or disorientated just remember that you don’t have to spend your energy being brave, or tough, or positive, or productive. No one sees you; No one is keeping score or rewarding points on how square your jaw is. On those dark days, just spend your energy on existing; don’t waste energy on asking yourself any more than this. And know that this, too, will pass.
I got these wise words in response to this blog on Twitter:
Sending you all the hugs. It's good to know we can go on while feeling broken. not either-or. And we are all going to need those holding spaces, and figure out how to have and hold them ourselves. Also, to ask for help, there often is holding in places where we weren't looking.