The eerie quiet of the end…

Sunday Blog 30: 3rd April 2022

I’m not quite sure what kind of reception at home I expected after leaving my workplace for the last time. A marching band? A heroine’s welcome? But as I’m guessing Barack Obama experienced from time to time, home is not always the place to relish and celebrate workplace accomplishments.

Not only was there an absence of a marching band, things the house-husband is stepping down from his role too. It’s time for me to pick up the mop and broom again, now that I am in at least a temporary state of leisure, and get back into the groove of contributing to maintaining the home as well as being out in the world.

What is that Zen saying?

Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.

Zen saying…

Not that I would be able to consider work enlightenment. Often it is the opposite of enlightenment, the drowning of self in doing. So I will listen to Ram Dass, and I will experience this part (and all) of my life as an unfolding curriculum.

And just think now, of all the perfect housework excuses I will have when writing deadlines are looming…

The final countdown…

Sunday Blog 29 – 27th March 2022

Adapted from this video – https://www.youtube.com/watch?v=0g7ARarFNnw

Perhaps you are kind enough to over-look the fact that last week there was no Sunday Blog. In truth I drafted it – but it didn’t feel quite like my story, so I didn’t hit send. Because staying out of others stories is usually the right call. Our James Clear (Mr Atomic Habits) always says – never miss twice. So here I am again this Sunday. But I’m not cheating, so it is Blog 29, not 30. We must have standards!

There are now just four days between me and the end of my tenure at the Health Consumers’ Council. My hair is not properly gray as just as I was poised to have the last dyed locks chopped off, my hairdresser has to isolate as one of her children is a close contact. (So selfish!)

It has been a very long three months and also a very short time (e.g. not long enough to actually have 100% gray hair) It also hasn’t been long enough for me to understand what I will leave behind and what I will take with me on the next part of my life. Can’t I just know for sure? I guess I could say I am emerging from the messy middle and the next stage is still, well unfolding, much like the Transitions book said it would. Bloody slow and inconvenient though.

I have been thinking about the Liz Gilbert explanation of the difference between a hobby, a job, a career and a vocation. I have definitely shed the career, but what of the vocation do I want to, or need to bring forward?

And then I read this blog about a mother of a daughter whose misdiagnosis prompted many unnecessary surgeries, lost years and family trauma. She decided she wouldn’t sue – not wanting the non-disclosure agreement that would mean any learning from this experience would be lost. This paragraph leapt out at me:

we never heard a word from those doctors again: not a call to apologize, not even a response to a question about medications during her hospital stay for the surgery. As time went on, I felt shocked that we could endure and be forced to process this experience while the doctors could go on as though nothing happened.

https://www.huffpost.com/entry/medical-malpractice-doctor-misdiagnosis_n_6220e96ee4b0c3935752e1a2

She discusses the Hobson’s Choice of 1) seeking financial compensation which means the issue is brushed under the carpet, where learnings are potentially also brushed like so much dust and dirt or 2) choosing not to sue but instead to advocate for change.

And the fire in my belly is a bit of a clue that yeah, this health advocate nerd thing is a vocation, not a career. And it’s still unfolding.

Writers Retreats

Sunday Blog 28 – 13th March 2021

This weekend I have been on another Edgewalker Retreat – this time focusing on writing – the last one was a more generic creativity retreat. I love to carve out a designated space where I am focusing on writing. I think it sends a strong message to the Muse. Especially when I turn up with my array of loud pants and matching earrings. One must dress for the occasion.

It is very encouraging when I think back to the previous Edgewalker Retreat in October 2021 where I was still trying to have the courage to go back into the thicket of my manuscript to continue to push it forward into something more publishable. My manuscript for my first novel that is – the one I have been toiling over for 7 years and have had to radically re-think and re-write several times already.

It has progressed so much more in that six months, despite all the work-related, well, work.

This weekend I also took time off the keyboard to finishing reading this month’s Book Club novel 7 1/2 by Christos Tsolkias (everybody seems to remember him best as the author of The Slap). What an extraordinary book it is – part memoir, a book about writing and an actual novel emerging within it. His writing is extraordinary and holds me to the last page. I’m not without my criticisms and frustrations about it, but I have to admire his skill and feel genuinely moved by the novel plot, the memoir and his current life and love.

The memoir winding through the book recalls his Greek family as peasant immigrants, his parents suffering through the rigours of hard physical labour in order for him to have opportunities they never could never dream of . His father would pick up his pay packet, walk past the book shop on the way home, and despite not being able to read the book’s name or blurb, would choose it nonetheless for the young Christos, an avid reader. Like choosing a bottle of wine on the attractiveness on its label (which quite frankly is a perfectly valid way of operating if you ask me.)

This quote from the book so moved me – it can be so very hard to claim the title of author and for him at least it was an exile from his family of origin. But still he doesn’t feel that he belongs in the aristocracy of the pantheon of (real) writers.

I have never forgotten the discussion with Michael Robotham a few Margaret River Writers Festivals ago, where he talked about how difficult it is to learn anything from the classics. They are so perfect, there is nowhere to get a toe-hold on how to create something that is anything like it. You learn more from bad books, he asserted, you can see what’s not there and you are inspired to try.

So I guess, here’s to bad books. But here’s to people claiming their writer, it’s hard. And here’s to the people that protect our tender creative flames by facilitating writers retreats! (Here’s looking at you Erika Jacobson!)

Holidays at home

Sunday Blog 27 – 6th March 2022

This week has seen some interesting changes in my ongoing process of Transition. It hasn’t all been working out according to my goals in my journal. To seek a bit of refuge I decided a staycation in a Fremantle Hotel was just the thing (see writing nook in photo).

As the week unfolded and was not entirely to my liking, I reminded myself, at least I am not in Ukraine. (I have to keep scrubbing out the “the” because like everyone I have been on a steep Ukrainian learning curve.)

I normally don’t watch or listen or read the news except in very small doses, and haven’t really changed that this week but even a tiny glimpse has been enough.

And in a moment that reminds me of all the excitement we once held about the possibilities of the internet, I have booked my next staycation. But I won’t actually be checking in. This time the accommodation is in Kyiv and I will not be going there. But I hope the money helps those who are stranded, unable to earn money. Apparently Air BnB are waiving all fees and ensuring the money is credited to people as soon as the booking is made. So far at least $2 million has directly reached people in need. The internet’s promise of global connectedness and grass-roots action feels almost close enough to touch.

The Resource of You

Sunday Blog 26 – 27th February 2022

It’s the end of a Writers Festival weekend, at the end of a month that has seen me attend a writing workshop every single weekend. I have purchased so many books for my To Be Read pile that I doubt I will ever get to them all unless I take a decade hiatus from buying books. And who wants to do that?

Plus this month I’ve turned in a third of my novella to my mentor and received good feedback of the “just keep going” kind. The writing life is definitely already upon me, meanwhile, the working life is still going with the same four days per week and nearly as much workload. The resource of me is indeed stretched thin.

I will therefore keep this 26th Sunday Blog short and sweet. I can hear thunder rumbling and the light in this room keeps turning on and off as if someone is trying to reach me from beyond, or perhaps it’s just the power cutting in and out.

Here is a quote from the December 13 2021 episode of the Dare to Lead Podcast where Brene Brown interviews America Ferrera for the second time. It seemed an important time to remind myself that allocating the resource of ourselves is a gamechanger.

Maybe in March I can finally master saying no and allocating my resources wisely…

Gray hair don’t care…

Author portrait, outdated before the print arrived

Sunday Blog 25 – 20th Feb 2022

I often thought that when I quit my job, (see this transition blog), I would stop dyeing my hair. I said that, but wasn’t sure I actually meant it. But I have found that the need to have a strong outward sign of the change within is too compelling. It’s official. Me and hair dye are through.

I thought about a range of options for how to achieve this, but as my hair is very short, I am opting for the no-cost solution of waiting for the dyed hair to grow out and be cut off. On Saturday I had my usual hair appointment. In the days leading up to it, I kept looking in the mirror, pulling my hair back, admiring the grey hair and how it looked against my skin and eyes. With my trademark impatience about how long things take, I expected my hair at the back at least to be almost entirely gray after my usual trim. It wasn’t. It’s actually more of a half-in-half sort of a look – almost like a baby bird moulting and getting new feathers.

I feel an impatience for this new gray hair, and am looking all around me to see all those fabulous women rocking their silver hair. Channeling their inner Elder as it were. I long to join their ranks.

Just before New Years I had an updated portrait done of me and my daughter, got a musician portrait for her and an author portrait for me (see image in the blog). I only picked up the hard copy yesterday.

“You’ll have to get a new author portrait done”, darling husband reminds me.

Nobody says transitions are easy or graceful.

Change? Or Profile of the struggle?

Sunday Blog 24 – 13th Feb 2022

If you don’t have a spare eight-plus hours, you might not find this Sunday Blog of interest. I worship podcasts, especially serial podcasts. I stumbled across The Trojan Horse Affair: a mystery in eight parts when listening to This American Life on Monday. They featured the first episode, and I was hooked. I had to listen to all 8.

There are many compelling aspects to this story, one being the two presenters’ relationship. Journalist Brian Reed meets doctor-turned journalism student Hamza Syed who pitches an idea to him the night before he starts journalism school. The story is from Syed’s hometown in Birmingham, England. Brian is hooked, and they team up to untangle the story of the so-called Trojan Horse letter. The two of them disappear down an investigative journalism rabbit hole for more than two years to create the series. The even end up in Perth, Australia.

The Trojan Horse Letter story itself begins in late 2013 when;

A strange letter appears on a city councillor’s desk in Birmingham, England, laying out an elaborate plot by Islamic extremists to infiltrate the city’s schools. The plot has a code name: Operation Trojan Horse. The story soon explodes in the news and kicks off a national panic. By the time it all dies down, the government has launched multiple investigations, beefed up the country’s counterterrorism policy, revamped schools and banned people from education for the rest of their lives.

https://www.nytimes.com/interactive/2022/podcasts/trojan-horse-affair.html

Finding out who wrote the letter is not a question that people in power want to be answered, as Brian and Hamza discover. The series starts with conversations with the supposed mastermind of Operation Trojan Horse, a man passionate about ensuring an equal opportunity for Muslim students in Birmingham. He joins a school council and turns the single-digit percentage of graduate students up to 70%. The Trojan Horse letter undoes all of this work and he is one of the several people we hear from who have never been allowed to re-engage in education again. The pain in their voices is palpable.

It’s Hamza’s question in the image of this post that made me stop, hand on heart, gasping at the enormity of this reflection. Rewinding and re-listening, capturing the question in an image, like a bug in amber for this post.

We often think that speaking up, bringing things to light will create change. Sometimes it does. And sometimes, it’s just another profile of the struggle. For me as an advocate, someone absolutely passionate about the power of the lived experience voice to drive change, it is sobering to remember that the lived experience voice is always and ever a David against the Goliath of power structures.

Grace Tame and Brittany Higgins have done so much in Australia to highlight the importance of addressing violence against women. The March4Justice in 2021 showed that the time is ripe for social change. And then in 2022, the ten-year plan to combat violence against women is launched, strategy-less into the nation. Baked in a University with no transparency about who got to have a say, it has no tangible actions or accountability mechanisms. A veiled, smudged-over mention that things are the same or worse in terms of the level of violence against women since the previous ten-year plan. It is such a threadbare and clearly meaningless political gesture – a smoke and mirror exercise to make it look as if something is changing when clearly it’s not. Will Grace and Brittany be able to create change or provide another profile of the struggle? It’s such a key question.

But I’m not nearly done with this podcast. It dug right into the nature of journalism, how it is important to be open-minded about a topic, to explore it without having a pre-conceived idea of answers to the question, the right and wrong of it all. And the core thread of Islamophobia that underpins the Trojan Letter thrums right through this podcast. I am ashamed to say I have not given enough thought to this issue. Neither had journalist Brian Reed because like me, he is white and mainstream. We just don’t have to think about the issue the way Hamza does. I cried as I listened to the recording of Muslim British Labor Politician Zahra Sultana’s speech – her voice breaks when she says “It’s to be treated by some as if I were an enemy of the country that I was born in as if I don’t belong.”

And I recognised myself in Brian. As the years and the episodes build up, Brian realises the impact of the story on Hamza is profoundly different to the impact of the story on him. He reflects on how his objective journalist view is another form of bystanding, and morally repugnant to Hamza. Brian asks himself;

I really do hope this podcast does spark the change that’s required. I know for me I am not the same person I was at the beginning of the week; before I listened. I have been enriched with new insights, challenged by fundamental questions and light has been thrown on blind spots I didn’t know I had. And that’s what good podcasts are all about.

Lost in The City

Sunday Blog 23 – 6th February 2022

I am one month into a three-month Transition which means I am once again commuting rather than driving to work. It is part of my shedding the golden handcuffs of the Executive Director role I held for seven years.

So it’s been seven years since I regularly commuted and I turned up at the station with my under-utilised train pass, with a backpack on and a light sense of reclaimed youth somehow. I lined up behind others who, in automatic pilot were tagging on for the $2 per day parking and swarming up the stairs to the station.

I tried to look like I knew what I was doing as there were two slightly different parking machines. On closer inspection, they both did the same thing and after a short tussle with reading, puzzling, and being self-conscious about holding up the queue I pressed the right buttons and was on my way up the stairs.

It was a combination of this and the backpack I think, that plunged me back into a 1990s memory in London when I was unusually attending a course in The City (as in 2.9 square kilometre finance district within the 1,519 square kilometres of Greater London). I no longer remember what the course was, but I vividly remember getting on a bus to travel the last leg of the journey after emerging from the Underground. This bus just serviced the City of London and everyone on the bus was in a sharp suit, with a clipped intensity of Very Important and Well Paid people travelling to work. It wasn’t like any other kind of bus in London so you couldn’t just use your normal pass to tag on. There was a weird machine with a maw-like dark entrance you had to throw the right gold coins into and no ticket was issued.

Of course, I couldn’t work out what to do, was scrabbling in my change purse, throwing coins at the machine, hearing the unexpressed but somehow audible (in a London kind of way) frustration of my fellow commuters held up by my fumbling. I sat down in shame, dressed in my charity shop trouser suit that was so obviously, and in every way different and inferior to the expensive, sharp suits around me. Everything in The City was about money and making money and I just didn’t fit.

Around this time I also remember having a night out with a group of people from I think Morgan Stanley Bank who I had somehow connected with due to the woman who lived in the middle floor flat. Because London.

Most people I hung out with worked in the museum sector like I did – we were civil servants and money was irrelevant and a little bit wrong. This smart group of young commercial banking people I had somehow ended up having drinks with had no trouble navigating the mysteries of buses in the City. I think we both looked down on each other and ended up having an argument about capitalist versus socialist ideals and I probably lost. My ignorance about money was pretty complete.

Around this time I found a book about money and spirituality, which I have long forgotten the title of, and began to try to untangle how I felt about money. I wanted to manage my finances a little better than I was, and was feeling the pinch of the reality that poverty is very over-rated. There were revelatory ideas such if you pay rent you pay it forever but if you are lucky enough to buy real estate you don’t have to pay that mortgage forever. I hadn’t ever borrowed much, but neither had I invested. Every job choice had been about an ideal or dream, rather than joining a lucrative profession.

Perhaps inspired by this book I bought a flat in a dodgy South Eastern suburb right when the bottom had fallen out of London’s real estate market. That proved to be the action that made my unexpected pregnancy about four years later much less of a path to ongoing poverty than it might have been.

I think I have remained somewhere between the extremes of this quote. Money as a sole arbiter of success is appalling, and there’s so much about income inequality and unaffordable housing that shows me that as a society we have currently got it wrong.

But me being able to pick up the tab for my own life is important and I constantly look for ways to be sensible and where possible, generous. I’m contemplating the wisdom of Elizabeth Gilbert insisting that we should not make our art pay our bills. Meanwhile a tender desire to make money from writing is emerging among my different thoughts about what happens next now that I have resigned from the day job…

Stopping for death

Sunday Blog 22 – 30th January 2022

Monday 24th Jan, in this last week of the longest January in human history, my Book Club friend Lencie died of cancer. I tossed up between this quote and “rage, rage against the dying of the light” because Lencie hoped against hope right up until the end that she would get better and go home.

As you may have read in last week’s blog, her oncologist said to her on Tuesday 11th January that her tumour markers were down and she had months left to live. That same evening someone from the Palliative Care Team informed her she would die that night. As she kept going for nearly two weeks, understandably she still had hope that she would get better. Especially when the oxygen pump she was by then hooked up to was increasing her sense of wellbeing, reducing her symptoms. This pump also precluded her from transferring to the hospice because they didn’t have this kind of pump. It wasn’t just static oxygen – it was a pump that was technically considered an intervention rather than a comfort measure. In all conversations back and forth about what treatment she wanted, Lencie’s option to transfer to hospice where the food was much better had been taken off the table.

I have been obsessively reading a new book by two doctors with about 1,000 research papers between them. They are passionate about reducing unnecessary care and the harm that it can cause. Called Hippocrasy – How doctors are betraying their oath, it makes a plea for fundamentally changing how we deliver medical and clinical care. Serendipitously I was up to the chapter on beginning and end of life at the same time as I was popping in and out of Lencie’s hospital room. watching from a carer’s perspective how we medicalise death and what it means at the end.

Doctors and nurses say they give dying patients much more aggressive treatments than they would want for themselves in the same situation. Terminally ill doctors spend less time getting treatments and less time in hospital than the people they once treated.

Hippocrasy, page 162

My own father died in October of 2020, and in this last week I have wondered, sometimes guiltily that I have thought so much more about Lencie’s death than I did about his. My father too felt he might go on a bit longer, but at nearly 95 with congestive heart failure, he probably had a hunch that was optimistic. He was frail as well. His life force had always been so strong, but it was starting to dim. Lencie on the other hand was only 56. She had a vitality and mobility that seemed at odds with her prognosis. Little wonder she was clinging on to some kind of hope.

Hippocrasy also says:

We need to divert the focus from avoiding death to ensuring a ‘good death’. A good death means one that’s accepted and comfortable, with conflicts resolved and according to personal preferences.

Hippocrasy, page 162

I’m really bloody sorry Lencie that your final meal was cornflakes and milk. If only we could have given you the cucumber sandwiches and high tea to go out on. We all got tangled up in the oncology versus palliative, in your false hope rather than reality. But that darn old death stopped for you anyway.

Rest easy Lence.

Lencie

Sunday Blog 21 – 23 January 2022

“No, not Lesley, it’s Lencie.”

Book Club, I’m trying to work it out now when it was, but I’m thinking 2006. We’re in Dymocks, Fremantle. The store is owned and run by a family, and the second son Clive is in our newly forming Book Club. I think it is about the third get-together. It is heaven. Each month Clive brings us actual books to look at and we squeal over them, get to touch them and then we decide on the one we will all read. A new member has joined – Lencie. We are a serious Book Club that reads every book and has detailed and sometimes heated discussions about what we thought about each one.

As I listen to her introduce herself, I think how often she must have had to explain the awkwardness of her birth name and how deftly and clearly she covered off on it. Lencie was a staunch Book Clubber from then until now. Some have come, some have gone but Lencie was committed. Clive alas left a long time ago and cut off our crack cocaine supply of new books to pore over for each Book Club.

I am almost positive it was her who articulated the standards for our Book Club. The title can’t be in bigger print than the author’s name, and raised lettering is usually to be avoided, especially if it’s gold. Over the decades we found this served us well.

Mind you, when we didn’t like a book, we would talk about that more than the ones we loved. And occasionally we have been blessed with the presence of the author who comes to debrief their book with us.

I remember the Book Club when Lencie announced she had found a lump on her breast. It wasn’t benign and she began the breast cancer treatment journey (how she hated that phrase – it’s really not a journey any of us would choose…) Those who have had the pleasure of knowing Lencie will agree she has the ability to articulate the difficult realities that others shy away from. She is direct and challenging while also curious and kind.

Thus my Book Club friend Lencie crossed over into my day job at the Health Consumers’ Council and she became a guest speaker at the December 2015 West Australian Clinical Senate. This is a gathering of engaged and caring health professionals who debate key topics. This one was called “The Patient will see you now – Thinking beyond accreditation to focus on the patient experience.” She and I were the only two non-clinical people on the day, but I knew Lencie would more than hold her own.

To quote from the final report:

Ms Wenden courageously delivered an enlightening account of her ‘roller coaster ride’ through the health system once diagnosed with breast cancer.

She described the health system as a big and at times impersonal beast – one in which it is often hard to feel seen and be heard. She shared that she often had excellent care, by excellent clinicians, and that the bad experiences related more to systemic than individual failures.

Highlighted throughout Lencie’s story was the lack of coordination across sites which included her file being lost in the system as she navigated treatment across 7 sites, none of which spoke to each other. The disconnect between hospitals GPs also impacted her care.

Additionally, complications were not addressed or picked up by staff and there were challenges with her ongoing medications.

Clinical Senate Report, December 2015, page 15

For “complications” read nightmares such as full-thickness radiation burns when her treatment was outsourced to a private clinic in the change-over when Fiona Stanley Hospital was being established. Everything that could go wrong with treatment always did with Lencie. At one point in her journey she posted an image that said “Fuck cancer, I survived the treatment!”

And then, around four years ago came the terminal diagnosis. The Lencie Bucket List was established, and as a member of Lencie’s chosen family, I joined in on a number of tasteful, fun and food-soaked outings.

Last Tuesday after a long-ish hospital admission she was told she wouldn’t last the day. She had also been told in the morning that her tumour markers were down and she could have 2-3 months left to go. It was a confusing, jarring experience for us around her, let alone for Lencie herself. Did she have 2-3 months or 24 hours? As it turns out, neither. She remains an oncology patient under palliative care, and the bumps and cracks between these teams were constantly evident. Her chosen family members and some family members too have been by her side, checking over and over again with the caring but somehow hamstrung treating team if the symptoms can’t be more relieved? She can’t be moved to the hospice so she has to stay on the cancer ward. They do their best, but it’s just a different way of caring.

I think back to her brave Clinical Senate presentation in 2015:

Lencie’s story identified the challenges clinicians also grapple with in relation to a large system, where consumers get lost and can feel like a number, not a person. She highlighted the many missed opportunities for better care through a lack of communication.

Clinical Senate Debate report, December 2015 page 16

Isn’t it a shame that not enough has changed between then and now? As I write she is still with us, and it’s so unclear if some of the comfort measures are actually prolonging the suffering. She is still here, but she’s no longer Lencie.

Rest easy dear Lencie. We will have an empty chair for you at our next Book Club meeting. It was your choice, The Man Who Mistook His Wife For A Hat and I was trying to comfort you a little in your last days reading it out loud to you. But you promptly fell fast asleep. You woke up eventually and said;

“That book is pretty dry isn’t it.”

A book fiend right to the end.