Age should not weary us…

Sunday Blog 45 – 17th July 2022

I found myself thinking recently – do I need an interview outfit? Then I thought that no, I was past it and I was Past It. There are no interviews I want to subject myself to, no jobs I want to obtain. It is both Miserable to be past it but Wonderful to be Past It. That torture of the teens and twenties, thinking “What Am I Going To Do With My Life?” What career, partner, children will I have?

And when all of these things have largely unfolded (I mean I will still work, but I am not looking for a career, I’m looking for an exit stage left into the land of wide-open days with lots of writing space in them.)

I remember catching up with my sister back in the 1990s on a short trip home from Europe which was my base for a decade. Her second child was crawling around on the floor, a robust 18-month old who hadn’t even existed when I had left Australia.

“I’ve had my children”, she said, and again in case I hadn’t heard, “I’ve HAD my CHILDREN!”

It seemed very relevant at the time, and when seven years later I finally joined her in the ranks of motherhood, destined to be a solo mother to an only, I finally understood the wondrous completed feeling of having all the children I was destined to have.

Time does shoulder you gently, or not so gently off the stage, but what a wondrous privilege it is, being able to watch the next generation tackle the “what will I do, will I marry and will I be a parent” conundrums.

The years of experience behind me can pad me like a solid back of a chair, give me confidence to navigate this strange and wondrous world, and enjoy my view from the stalls.

Still loving my grey hair, too.

Second Opinions

Sunday Blog 44 – 10th July 2022

The quote above is from book I have been obsessed with for some months now. The book is called Hippocrasy – How Doctors Are Betraying Their Oath and is written by two doctors – Rachelle Buchbinder (a rheumatologist and epidemiologist) and Ian Harris (an orthopaedic surgeon). It’s the kind of book that must be written by doctors, because mere mortals take on doctors at their peril. Ask any politician who has tried to take on the AMA.

I’m not done with last week’s debriefing of Episode 8 of the Impatient Podcast. Guest Dr Ben Bravery talks quite a lot about second opinions, and how the “vibe” of the consultation with the second oncologist he approached when in the stressful and surreal process of trying to work out what cancer treatment to choose changed. It was when Ben mentioned it was a second opinion. The oncologist was not impressed, his face darkened and the phrase “doctor shopping” was bandied about.

A surgeon’s disdain of patients seeking a second opinion and consulting Dr Google can permeate medicine, but as the quote above says, the surgeon has a vested interest in you choosing to have surgery. For something as important as consenting to surgery, a second opinion is a must. In Ben’s case he needed to have surgery, but this second opinion was so different from the first opinion, and very likely saved his life.

I have fantasised for years about a mythical healthchoice.com.au website for Australians to be able to consult. I imagine us plugging in what it is we are considering undergoing (knee replacement, elective caesarean, cancer treatment…) and seeing all our options in a matrix that has been independently reviewed.

We are SO far from that reality. We make most of our health decisions in a vacuum of information. We usually don’t even know what she would expect in terms of the optimal treatment (with the exception of some cancers – thanks Cancer Council! and we certainly have no idea what our surgeon’s success rate, infection rate, revision rate etc might be. The murky world of medical device companies, whose customers are doctors, is largely opaque to the public. Their goal is to get surgeons to use their devices, and our consent conversations with surgeons are littered with the marketing patter of medical device companies.

We also are not usually aware of all the costs that we will be up for if we undertake surgery – hospital costs, anaesthesia – all of this needs to be painstakingly researched or discovered after the fact when it’s all too late.

Ben Bravery compares consenting to surgery as making a significant purchase where we naturally research, shop around, ask others what they think;

It’s completely natural to do that and it should be encouraged. I tell all my patients go and get a second opinion. And don’t stop there. If you have the means, get a third one. And bring in the paper you’ve printed from the Internet. Bring me in the blog about the person with Lived Experience that has a treatment that you want to talk about. Because my skill is translating that space between all the medical knowledge I’ve inherited and your life. That’s how I see myself, right. I’m not an expert in the disease, I’m an expert in how to translate that to the person sitting in front of me.

The Impatient Podcast, Episode 8 – interview with Ben Bravery, 52 minute mark

Another quote from Hippocrasy:

Saying that a proposed treatment is ‘the latest’, ‘what everybody’s doing now’, ‘targets your disease specifically’, or ‘very safe now’ says nothing of its effectiveness or, for that matter, its actual safety. And saying ‘there’s now quite a lot of research on this treatment’ doesn’t tell the patient whether that research is favorable, but does make them think that it is. Doctors, like salespeople, spend a lot of time talking to people and guiding their decision-making. With practice, it becomes easy to project your own wishes onto the patient.

Hippocrasy, page 127

And this:

We shouldn’t necessarily trust the doctor with these decisions [consent to procedures]. They often have a biased view of benefits and harms, they don’t necessarily recommend what they would want for themselves, and they’re not the one taking the risk.

Hippocrasy, page 131

Having spent two decades as a consumer advocate in one form or other, I want to shout these top tips from the rooftops – when going to consult take a friend! They can take notes and make sure all your questions are answered. Prepare your questions! (if you have no idea what to ask, which is perfectly usual, start below:)

Expect your surgeon to be willing to discuss what you have found out on Dr Google. Move onto the next surgeon if they’re not. Challenge them further and ask if they are willing to share key safety and quality statistics.

In life we seem to have one or two grooves we endlessly riff off. For me, informed consent is one of those. We have a long way to go to get to informed consent to medical procedures, to our mythical healthchoice.com.au.

I am not sure we will ever get there if we continue at the current doctor-friendly (i.e. glacial) pace of health reform and change that we are currently travelling at.

Thus endeth the Sunday lecture!

The Patient Centred Myth

Sunday Blog 43 – 3rd July 2022

When I first started my Sunday Blog 43 weeks ago – back in the dim distant land of August 2021 before I had taken the radical decision to leave the Health Consumers’ Council – I had on top of my list of “blog topics to write” about the myth of the patient-centred health care system. The blog post idea was number 1 on the list and has languished somewhat in the months that have followed. It was supposed be like an opening volley for my next planned book – a non-fiction book about the health system.

Back in August, the working title for the book was “The West Australian Body Owners Guide to the Health System.” Over the months it has shifted and morphed (many people’s responses to the working title certainly encouraged a re-think) into The Patient Centred Myth.

The quote from today’s blog comes from Episode 8 of The Impatient Podcast, an excellent podcast by cancer patient Nicole Cooper and her brother Sean Crank. They interview Zoologist, Cancer Patient and Doctor (in that order) Ben Bravery. It’s an excellent interview and worth the time to listen – there’s so much in it that I had to keep stopping and transcribing bits.

After Ben Bravery finished his cancer treatment he decided to retrain as a Doctor (he was already a Zoologist) and was planning to become an Oncologist. But his medical training put him off the idea.

I was struck by … the way that Medicine was taught. First of all, it’s archaic, and it’s hostile. And I thought that the focus was on the wrong things … people have this idea that if you focus on the whole person, or the whole patient, and you connect and you understand and you give time to listen and you educate families, and you write down notes that they can understand and you make extra calls when you need to, that you’re going to lose “The Medicine” … That you’re going to lose the anatomy and the chemistry and pharmacology. But you don’t. … It’s not a trade-off. But the bulk of medicine has just focused on the bio medical stuff. … And then they use the excuse that there’s just no time to do the other stuff.

The Impatient Podcast Episode 8 – We’re All People – about the 42 minute mark

Archaic. Hostile. Like our humanity is the enemy in medicine.

Interestingly he has decided to become a Psychiatrist, and I love what he says;

 I don’t have a lived experience in mental illness, I have a lived experience in cancer. But I’ve got lived experience as someone who’s very sick and I see very little difference between the mind and the body. And I’m all about breaking down that stigma, because they are illnesses and they can be treated and they can be understood.

The Impatient Podcast Episode 8 – We’re All People – about the 45 minute mark

So while I am no longer running our state’s patient advocacy non-profit, I am still a consumer representative. Because, as previously noted, it is a vocation, not a job. I am still encountering hostility from time to time in meetings when trying to correct the course of culture and clinical service models back towards being people centred.

I’ve got a lot more to say on this topic. Like a lot. But today’s Sunday blog felt like the right one to strike the first blow on this topic, make a tentative new start on this writing project as I almost near the end of the my shitty millionth draft of my novella.

Twenty-Seven

Sunday Blog 42 – 26th June 2022

Number 27 on a table number in a cafe with a red brick wall

Inside, I feel 27. No matter that I am that plus 30 years. There was something about being 27 – I felt like I knew who I was, and starting to kick some ass in life. Perhaps because my birthday is on the 27th I resonate with that number. I I decided this week that I would pick the 27th of the month to send my new monthly e-news out. Having made that pronouncement and felt that internal “click” of committing to a decision that I have made before but not honoured, I randomly googled the number 27. This is what leapt out at me:

This number is about non-judgement, compassion and tolerance of other and their beliefs. People with 27 in their numerology charts should use their idealistic viewpoints, humanitarian nature, people skills, and wide array of knowledge to help humanity.

https://thesecretofthetarot.com/numerology-number-27/

A sign.

Then this weekend I met with my Emerging Writers Mentor Nathan Hobby to discuss the latest round of edits. I got to the cafe early to make sure I had read through all his comments before he arrived. When I went up to order coffee, the waitress gave me table number 27. Another sign!

So tomorrow I will be launching this to my subscribers. I plan to pull together a digest of Sunday blogs and share other titbits that I prefer not to share publicly. If you would like to subscribe, just click on the image below.

Happy Sunday.

A bit too culty…

Sunday Blog 41 – 19th June 2022

In 1979 when I was just 14, life became a little interesting in my staunchly Catholic, very suburban household when my eldest (kind, thoughtful, smart, gentle and idealistic) sister joined the Orange People. At the time they wore orange clothes (hence the name) and followed Bhagwhan Shree Rajneesh, later known as Osho. It prompted a groundswell of all the things within my family as can be imagined. But for me, it caused an unpicking of my childhood Catholic strait jacket, seam by seam. There were so many of the same problems in both organisations it seemed to me, even though outwardly they appeared so different.

Fast forward many decades, and two months ago I was recommended the podcast A Little Bit Culty. I started with the episode featuring Erin Roberts talking about her time in the Orange people, and raged and wept as I listened. The abuse of women and children is so devastating. Also the fact it took Erin most of her life to recognise that what she experienced was abuse got me in all the feels.

I then went back to find out more about the hosts, Sarah Edmondson and Anthony Ames and their flight from the NLP infused self-development cult NXIVM. They escaped from NXIVM and were part of dismantling it and ensuring the leader will never get out of jail (very satisfying). I have been dipping in and out of this important podcast, every now and then needing breaks, because this stuff is hard.

So in the tradition of “Too Long Didn’t Listen” I have extracted some nuggest from my hours of listening:

-Much like people trapped in domestic violence situations, people outside a cult can look in and be very judge-y, imagining they are completely immune from this ever happening to them, and puzzled why they “don’t just leave.”

-People don’t join cults – they follow a dream or an ideal – usually a better world, a new way of doing things, a great leap forward for human kind. There can a lot of shame for people leaving cults, who can berate themselves for getting into them in the first place. It’s important to remember the positive things they were pursuing, and the wonderful experiences that can be had in a cult, even if it turns to ash after a while.

-Once they are seduced into a cult, the leader will usually perform a predictable range of manipulative behaviours. These have been painstakingly researched and put into a model called the BITE model by Dr Steven Hassan, himself an escapee from the Monee cult (see image above). You can look up for yourself here to find his short document which lists the features of a cult in terms of control of Behaviour, Information, Thoughts and Emotions. Working through that list and seeing how many ticks an organisation gets can help you begin to identify if you are in a cult, can open up that little gap to allow some critical thinking to creep in.

-It’s very hard for people in cults to have any time to have that little gap for critical thinking as they are kept very, very busy. This might mean a punishing schedule of talks, tasks, daily routine. Or it might mean distracting people with new ideas.

-Another key feature is disconnecting people from their gut instincts, their warning signals for when things are moving into the realms of abuse. Usually this is achieved by telling followers they don’t have enough faith, or they don’t have the grit it takes to keep on working on their issues etc.

-Dr Steven Hassan provided a super helpful approach when you think a loved one may be in a cult. He talks about this in the second episode of A Little Bit Culty.

Be open, curious, acknowledge the ideal that your loved one is seeking through the cult. Assure them that you too want a better world and ask them to explain to you how this cult is the only way to achieve that. This open conversation can encourage an ongoing dialogue which may help them think their way into freedom.

It just felt important to share this here. A little bit culty might be OK, but a lot culty is not OK…

Sh*t happens

Sunday Blog 40 – 12th June 2022

“I don’t believe things happen for a reason, I just believe life is actually the randomness we see around us.”

Maya Shankar, Episode 17. Riz Ahmed Plays Himself, at the 17:25 minute mark

It’s been a week of rich listening on various podcasts, including a favourite, A Little Bit Culty which I am saving for next week’s blog.

This week belongs to the excellent A Slight Change of Plans. Not one but two Slight Change of Plan episodes I randomly listened to, tackled the popular idea that “everything happens for a reason.” These were episode 17 – Riz Ahmed Plays Himself, and Episode 32 – A Test of Faith featuring Kate Bowler whose life is upended by a Stage IV cancer diagnosis at age 35 with a 1-year-old son.

These two thoughtful episodes dig into the idea that the belief “everything happens for a reason” means that when bad things happen, it lets loose the dogs of victim blaming. There must be something you did or didn’t do that caused this bad thing to happen to you. Life is not random, but completely ordered. It strips away our empathy and fellow-feeling.

Kate Bowler describes how her terminal diagnosis made her aware of the precariousness of life, and this realisation “opened up in me a capacity to love other people and their precarity.” (23 minute mark)

In short, if we give up the certainty that life is ordered, and that when things happen “there is a reason,” we are able to embrace the complexity and randomness of life, and see each other as we all really are – not special, not immune, all just as likely or unlikely to have bad things happen.

In a New York Times article Kate Bowler wrote in 2016, just months after her diagnosis, she recounts the neighbour who came to drop off a meal and tell Kate’s husband that “everything happens for a reason.” She was very startled by him asking what that reason might be.

“She wanted some kind of order behind this chaos. Because the opposite of #blessed is leaving a husband and a toddler behind, and people can’t quite let themselves say it: “Wow. That’s awful.” There has to be a reason, because without one we are left as helpless and possibly as unlucky as everyone else.”

Certainty or love. Not really a choice, is it? Love wins!

Seven Year Cycles…

Holiday Monday Blog – 6th June 2022

While I have some regrets about this, I did not send my daughter to Steiner School. She comforts me by reminding me she wouldn’t have met her partner if she hadn’t gone to the school she did, so I think I have let that go now. But still, mainstream school wasn’t great in many ways and I still love Mrs Aylward with a passion parents reserve for those teachers that “get” and encourage our children.

Rudolph Steiner had many things to say about many things, but I am always intrigued by his belief about the importance of seven year cycles. This short article reminded me that I am at The Cross-Roads – Mastery or Evaluation, ages 57-63. Steiner maintained that 56 is an important turning point in your life, and for me, that signaled me joining the Great Resignation and leaving my leadership role and venturing/blundering out on my own. And letting my hair go grey, a sign of the massive transition within.

I have been Marie-Kondo’ing my website, reading old blogs with a fascination of watching my seven-years-ago self tackling the idea of becoming an entrepreneur, a coach. I am saving these old posts like bugs in amber for posterity into a separate database and then deleting them from my website, to let the fresh air in. I’ve come out as a coach and lived experience consultant properly, with whizzy online forms to meet with me for coffee. Plus of course updated the whole site so it’s clear I am a silver fox/ proper crone now.

I am just at the beginning of this new seven year cycle. It does feel that life gets better and better. Or at least, that my website is getting better and better. Lol.

Snagged on the to-do list…

Sunday Blog 38 – 29th May 2022

It’s a Saturday morning, after yoga and we’re having coffee. I haven’t been for a while so some of my fellow yogis ask me how it’s been going since I left work, almost exactly two months ago now.

I reel off the things I’ve been doing – making a drum, going to Quairiding, some consulting, some committees… I may not have shared how very good I now am at Wordle and Quordle (there are practice games as well as the daily games, if you really want to disappear down the five-letter rabbit hole forever…)

“It sounds like you’ve filled your free time with a whole lot of things,” one of them challenges. “What about writing?”

“Ah. Yes, I’m glad you asked me that”, I dissemble.

What floats to my mind next is the many, many hours of volunteering work I have done in the last two months, as a sort of rebellious “I’m not working now so I can do what I want!”

However, all that volunteer work involves lots and lots of administration and small details. To-dos breeding to-dos on my list – which make me feel productive and valuable until Poof! it tips over from exciting and engaged to overwhelm and I find myself snagged on my to-do list like barbed wire.

Can you relate?

Outgoings of this last tremendous tide…

Sunday Monday Blog 37 – May 22 2022

“What beautiful earrings!” my Hairdresser complimented me. This happens to me quite a lot now. Since my friend Lencie died earlier this year, her many many pretty things were divided up among her family and friends. So we are carrying her around, each and every day. Earrings, necklaces, rings, scarves, mugs. She did have exquisite taste.

Sometimes I think that all the wisdom of life is contained in E.M. Forster’s novel Howards End, which tackles money, death, friendship and class (among other things). When people compliment me on Lencie’s jewellery, I keep thinking about that scene after the main character Margaret Schlegel loses a friend from cancer. She is pictured at a metaphorical beach, where a “wave had strewn at her feet fragments torn from the unknown.” I think of these objet d’arts of Lencie mysterious fragments of that transition – she was here and then, she is not here.

I’ve never been much of a collector of things, I worship de-cluttering. It always amuses me that I lumbered into a museum career three decades ago by accident, because I had computer skills (that was the 1980s, man). Objects really aren’t my thing, but their stories are interesting. I know some of the story of Lencie so her pretty things are interesting to me. I like that I can take her out and about and that others can admire her taste.

P.S. Sunday was canceled in a flurry of feeling ill and getting Covid tests. Yet again I convinced myself I had the dreaded lurgy, and I certainly did feel awful – but it is not The Covid. Anyhow, I didn’t surface all Sunday, or even for much of today, so the Sunday blog has become a Monday blog, and it’s still Sunday in America somewhere…

Artist Dates

Sunday Blog 36 – May 15 2022

a weekly expedition to explore something that enchants or interests you

Julia Cameron, author of The Artist’s Way, in a 2015 blog https://juliacameronlive.com/2015/02/24/the-magic-of-artist-dates/

About seven years ago I got serious about that classic book The Artist’s Way by Julia Cameron and began my Morning Pages (three pages of hand-writing -stream-of-consciousness/ blurting/ dumping and certainly no editing.)

I started to work through the exercises she sets each week to uncover any artist wounds you may have seen over the years (here’s looking at you, art/ signing/ English teacher…) although fairly early on I began to wane in my zeal. I think I still have the letter I wrote to the tutor I had in the 90s who told me my play sagged in the middle. (That’s week One’s exercise, where you write to someone who crushed your artist spirit, so it’s an indication of how soon I flagged.)

The Artist Date is a great concept – a weekly date with just you and your creativity. You can’t take anyone with you, because then your creativity is having to play gooseberry instead of feeling centre-stage where it belongs, for at least one hour per week. You don’t have to do anything very high art either – just something that enchants or interests you, as Julia says in the quote above.

Today was a treat – the Michelangelo’s Sistine Chapel exhibition where you get to see details of this incredible fresco close up in replica form. There is an app (of course) where you can scan a code and listen to a description of each panel while you marvel at the craft.

Interestingly even though it is an exhibition of replicas there was an echo of the bustle and crowd of the Sistine Chapel as we all milled around the images and kept on having the tap the QR code for the next bit of audio (and it always took longer for us Gen Xers and Boomers while the Millenials tapped and listened.

But I digress. This is just to say, taking your Artist out each week is a wonderful habit to get into. Thanks and big love to Julia Cameron.