Ep 54 Living with ambiguous loss, with author Erin Stewart

A lot of true crime cases start the same way – someone didn’t show up at work, or didn’t come home on time. Their family or friends go to the police to report them missing, but the police tell them they have to wait, or don’t act on the information, or don’t believe the family members.

Listening to true crime podcasts, I often find this baffling. If the police had acted sooner, maybe the person could have been found alive, or found at all. But learning about missing persons through the context of one case belies the bigger issue.

In Australia alone 38,000 people are reported missing across the country each year – more than 100 a day.

In her debut nonfiction work, The Missing Among Us, author Erin Stewart explores the issue of missing persons from a variety of perspectives, including the lack of police resources that leave families leading their own searches, the Stolen Generations, and cults.

Erin is a Canberra-based freelance writer who has written for a range of Australian and international publications including Meanjin, Voiceworks, ABC Online, SBS Online, Daily Life, Overland, and many others. She has been an opinion columnist for The Age and made regular appearances on ABC Sydney Mornings to talk about books and the arts. An earlier version of her book was shortlisted for the Portobello Books Unpublished Manuscript Prize in the UK.

And what drew Erin to the topic of missing persons is just as fascinating.

In episode 54 of James and Ashley Stay at Home, Erin discusses how the ambiguity of living with chronic illness drove her interest in missing persons. ‘The Missing Among Us’ is ‘about finding a space for those conversations about ambiguous circumstances in order to understand the complex issue of missing persons.’ She also describes her experiences with Ehlers-Danlos Syndrome and the research behind her book.

I also share the story of Michael Kalagian, the man who has haunted me for years.

Michael may have been essential to my family history, possibly as the person who brought my great grandparents over to Canada in 1921. He definitely lived in St Catharines; he’s pictured here with my great grandfather’s older siblings.

But when I interviewed the St Catharines Armenian community, no one could remember him. Supposedly born in 1881, he died in 1943, though no one could tell me how. He didn’t even have a gravestone until 1960, when my grandparents buried their infant son over Michael’s coffin and provided a shared stone.

Michael was likely my great grandfather’s uncle. He may have had no wife and children, or he may have had an entire family that was lost during the genocide while he worked in Canada.

No one could tell me anything about him. How completely forgotten Michael was, how little his existence mattered to anyone still living – that’s what haunts me. He’s missing, but in a different way.

The Missing Among Us made me think about missing persons – and living with the ambiguity of chronic illness – in all kinds of new ways, and I was delighted to speak to Erin about it.

Books and authors discussed in this episode
The Myth of Closure by Pauline Boss
Brave New Humans by Sarah Dingle
– ‘What if there’s no such thing as closure‘ by Meg Bernhard, New York Times
All the Pretty Horses by Cormac McCarthy
Missing Richard Simmons podcast

Listen to episode 54 of James and Ashley Stay at Home here, or on Apple podcasts, SpotifyStitcher, or your favourite podcast app, and find out about past episodes here.

The top 10 most popular episodes of James and Ashley Stay at Home

James and Ashley Stay at Home, the podcast I co-host with author James McKenzie Watson, is about to hit 50 episodes.

We’ve been exploring writing, creativity and health since way back in June 2020, and we’ve talked to an amazing variety of guests. If you live with chronic illness or have a writing or creative practice, we’re bringing you guests that we hope you’ll love and learn from, as we have.

To celebrate our (almost!) 50 eps, here are our all-time top 10 most popular episodes.

James and Ashley Stay at Home podcast yumiko kadota

10. Burning out with Yumiko Kadota, author of Emotional Female (ep 28)
Dr Kadota shares shares the devastating effects of burnout, the difficulties women of colour face in the public health system, and the possible future directions of chronic fatigue research. Her revealing memoir is a bestseller so it’s no surprise this ep is so popular.

Author Ruhi Lee on James and Ashley Stay at Home podcast

9. Recovering from childhood with Ruhi Lee, author of Good Indian Daughter (ep 30)
Ruhi Lee (who recently revealed her real name, Sneha Lees) discusses what it means to be a girl in a South Asian family, the notion of unconditional parental love, and how one generation avoids making the same mistakes as the last. Her memoir is raw and real, and full of unexpected laughs.

Woman in art studio

8. The healing power of creativity with Karin Foxwell, art therapist (ep 9)
In this fascinating interview, Karin describes the profound therapeutic power of art, as she’s observed in her work with military and emergency services personnel who’ve sustained PTSD in the course of their service. She also describes a ‘standard’ art therapy session, discusses the therapeutic power of writing, and explains why she thinks everyone should engage in some kind of art therapy.

This is an incredibly heartening episode, and I recommend it every time I teach about creativity.

Man and woman in Australian woods

7. Living with chronic illness: James and Ashley talk health (ep 10)
James and I discuss our own illnesses, chronic inflammatory demyelinating polyneuropathy (CIDP) and chronic fatigue syndrome (CFS) respectively. We explain these conditions, discuss how they affect day to day life, and explore how illness has impacted our senses of self.

6. Where’s my Man Booker? James and Ashley share writing tips (ep 6)
It turns out we should all listen when James discusses writing tips, since he went on to witn the 2021 Penguin Literary Prize! He knows what he’s doing.

Author Anna Downes headshot and book covers

5. The year that almost killed Anna Downes, author of The Safe Place (ep 5)
Anna discusses the role motherhood and post-natal anxiety played in the development of her internationally bestselling debut The Safe Place, and how sacrificing one creative career helped pave the way for success in another. Anna’s second book, The Shadow House, is now in bookstores – and I’ll be in conversation with her about it for an online library event on Thursday 3 February. Join us!

Kate Mildenhall author headshot cover

4. Navigating creative anxiety with Kate Mildenhall, author of The Mother Fault (ep 13)
Kate generously discusses the craft of novel writing, the challenges of penning a second book, and the creative anxieties that plague creatives. This is another episode I recommend in every one of my creativity workshops.

3. Introduction episode! (ep 1)
If you’re new to James and Ashley Stay at Home, this is the place to start. (We hadn’t figured out how to write titles back then!)

michelle-tom-james-ashley-stay-home-podcast

2. How to survive an earthquake with Michelle Tom, author of Ten Thousand Aftershocks (ep 38)
We discuss the captivating and highly original structure of Michelle’s memoir, the strange parallels between childhood trauma and earthquakes, and the transformative power of owning your narrative. This was our most popular episode of 2021.

James and Ashley Stay at Home podcast

1. Living in different universes with Ada Palmer, author and historian (ep 16)
Ada Palmer is an historian, composer and author of the Terra Ignota sci-fi/fantasy book series. She’s also an incredible speaker who lives with invisible illness. Here, she discusses how she’s managed to achieve her astonishing body of work while living with chronic pain, and the relationship between identity and disability. Ada offers valuable advice to all creatives who experience illness, so it’s no wonder it our most popular episode yet.

James and Ashley Stay at Home podcast

Listen to  all episodes of James and Ashley Stay at Home here, or on Apple podcasts, SpotifyStitcher, or your favourite podcast app, and find out about past episodes here.

My only resolution for 2022

Happy New Year! This morning I woke up early and went for a swim, and while the ocean waves slapped me in the face, I resolved to not complain about anything.

Couple standing on the beach, holding takeaway coffees

To be clear, that was my resolution for the day, ie January 1. There’s no way I’m going all year without complaining. Have you seen the weather forecast?

Sydney fireworks over harbour bridge

On New Year’s Eve, I watched the 9pm fireworks and pretended they were the midnight fireworks (this is easy if you ignore all the small children running round), and thought about the year past and the year ahead and the 21,000 covid cases reported in NSW that day.

Since I was diagnosed with CFS, I’ve mostly given up making resolutions. Last year I planned to use the word absquatulate more (more than never) and then promptly forgot about it. I still like this plan, but it’s tough to leave abruptly when I no longer go anywhere thanks to covid.

Author Ashley Kalagian Blunt in Santa hat at the beach, holding a pomeranian in a santa outfit

In 2020 I made some earnest resolutions, which was a real joke. And in 2019 I made probably the best set of resolutions of my life.

The fatigue improved significantly in 2021, much more than in 2020. It’s still a major factor in my life though, and an unpredictable one. I spent most of Christmas Day so unwell that I could barely sit up. Trying to eat was miserable.

From left: me, Petronella McGovern, RWR McDonald, Anna Downes, Sarah Bailey, Dani Vee & Laura Elizabeth Woollett

On the other hand, at the start of December I attended the Bad Sydney Crime Writers Festival. I had a tremendous time with some of Australia’s most talented crime authors, and actually stayed awake until midnight for the first time since I got sick.

So, progress.

Between the CFS and covid (and my concerns about the possible combination of those two conditions for me personally), I think the only reasonable resolution I can make is to accept that the year ahead will be as capricious and unforeseeable as the previous five.

The motto of 2022: subject to change.

That said, I do have some fun and (thankfully!) online events coming up. In January, I’m teaching two more workshops with Laneway Learning.

Make 2022 the Year You Write Your Book
Monday 10 January 2022, 7:45-9pm AEDT

The Joy of Creative Writing
Monday 31 January 2022, 7:45-9pm AEDT

Both workshops are on Zoom, open to everyone, and are only $14 (or $9 if you get an early bird ticket)!

Author Anna Downes headshot and book covers

And in February, I’m doing a free online talk with author Anna Downes on Thursday 3 Feb, 11am AEDT, about her new novel, The Shadow House. (If you don’t know Anna, listen to episode 5 of James and Ashley Stay at Home to hear about her internationally acclaimed debut novel, The Safe Place.) RSVP here >>

So come and join me online sometime. I’d love to see you! You can ask me how 2022 is going.

Sandy pomeranian smiles with a double rainbow over the ocean in the background

Wishing you a year of double rainbows.
xo

Ep 41 When you get it this young, you have it forever with author and editor Heather Taylor Johnson

When she was diagnosed with Ménière’s disease at age 25, one of the many things it meant for Heather was that she’d have to quit skydiving – though not until she’d injured herself trying to hold on the person she was before.

Heather Taylor Johnson is a writer and editor. Born in Minnesota and now living in South Australia, she has written novels and poetry collections, and is the editor of Shaping the Fractured Self: Poetry of Chronic Illness and Pain. Her writing has been published in Meanjin, Southerly, Cordite, Westerly, Griffith Review, Island and TEXT. She lives with Ménière’s disease, a disorder of the inner ear.

In episode 41 of James and Ashley Stay at Home, she discusses how more than two decades of living with chronic illness have inspired her writing and led to the anthology Shaping the Fractured Self: Poetry of Illness and Chronic Pain.

She also shares Van Gogh’s misdiagnosis with her condition, describes how a year of studying art has changed her writing process, and tells us about her latest book, Rhymes with Hyenas

Books and authors discussed in this episode
Beauty is a Verb: The New Poetry of Disability by Jennifer Bartlett (ed)
Prosopagnosia by Sonia Hernandez
No Rules Rules: Netflix and the Culture of Reinvention by Reed Hastings and Erin Meyer

Listen to episode 41 of James and Ashley Stay at Home here, or on Apple podcasts, SpotifyStitcher, or your favourite podcast app, and find out about past episodes here.

Fruitys for Life*

The people in the computer

Your work has started a conversation
Teeth over teeth tattoo

Live fast, die pirate

Think of good things 15 seconds plus, think about how it made you feel!

Chuck black high heels
Cupcake with bow
Fruitys for life

Thanks to the health professionals and all other essential people.
Addicted to hair

Snake bite speeding cop body cam

“No matter how else you suffer, you will never have an itchy spleen.”

Cleveland butcher, torso murderer
What a Bobby Dazzlwr!
Ah struth — violence in braveheart

Ah beauty Jacqui’s mum

Writing is about the love of strangers
I don’t sit down to commit an act of literature.
Billy Collins

Jenna artist

Tattoo: a noose with the words hang in there

Experience furniture like never before

Increase simplicity
Increase flow state time
Increase time with people I love

“It doesn’t matter if you’re sick”
fuck you.

*This week I opened my Notes app and found the above collection of text. At various points I entered each of those series of words into the note, adding to it progressively, intending to do something with those phrases and concepts.

But what? I have no idea.

Regardless, I still get a kick out of the phrase fruitys for life.

Instead of anything sensible, please enjoy these photos from the 2015 Sydney Vivid Festival.

The relative shape of a human

When I first met up with Monica Michelle via Zoom and asked how she was, she replied “A relative shape of a human.”

I recognised the feeling.

Monica hosts Explicitly Sick, one of the podcasts from the Invisible Not Broken network. She lives with Ehlers Danlos Type 3, fibromyalgia and POTS, and after having to give up a career in photography, she now interviews writers, creators and artists with chronic illness.

Ehlers Danlos syndrome is one of many conditions I hadn’t heard of before I struck by chronic illness myself and discovered a community of millions of people living with a wide range of conditions that prevent them from fully participating in their own lives. Ehlers Danlos is actually a group of related connective tissue disorders that result in pain and fatigue, among a complex variety of other issues.

She started her podcast in part to “help others be kinder and more gentle with each other.”

Even while she’s coping with physical pain, Monica is a delight to speak to. In this conversation, we discuss:
– chronic fatigue syndrome and my experience with insidious onset
– the impact of illness on personal relationships
– marriage counselling
– the challenge of asking for help
– writing about illness
– Fiona Wright’s The World Was Whole
– what progress means when you’re sick
the secret to fighting project inertia in creative projects

You can watch the full interview here.

Wishing you your full humanness,
Ashley
xo

Ep 28 Burning out with Dr Yumiko Kadota, author of Emotional Female

Yumiko Kadota was a junior doctor and working hard towards her goal of becoming a plastic surgeon in NSW. But the demands of her workplace became increasingly extreme, and she found herself dealing with bullying, sexism and racism, as well as unreasonable hours. If anyone should know how important sleep is for the body, it should be health care professionals (and the people who manage their rosters). Right?

Instead of sleeping, Yumiko was working longer and longer hours, and was constantly on call. Her health started to deteriorate.

By the time she left her job, she was so unwell that she ended up back in hospital – as a patient.

James and Ashley Stay at Home podcast yumiko kadota quote

She recounts her journey from ambitious student to junior doctor to patient suffering burnout and depression in her new memoir, Emotional Female.

In episode 28 of James and Ashley Stay at Home, we talk to Yumiko about putting your health first, how burnout affects empathy, and the stigma of invisible illness.

We also discuss Yumiko’s experience with chronic fatigue and the research it inspired: ‘I knew that what I’d experienced was real, and I wanted science to back it up.’

We also discuss why the working conditions of doctors are important for everyone: ‘One of the features of burnout is a lack of empathy [which] really affects the quality of care given to patients.’

Books discussed in this episode
– ‘A Room Called Earth’ by Madeleine Ryan
– ‘Earthlings’ by Sayaka Murata
– ‘The Road’ by Cormac McCarthy
– ‘Thus Spoke the Plant’ by Monica Gagliano

Listen to episode 28 of James and Ashley Stay at Home here, or on Apple podcasts, SpotifyStitcher, or your favourite podcast app, and find out about past episodes here.

The secret to fighting project inertia

Recently I was invited to be a guest author at the Sutherland Shire Fellowship of Australian Writers, who are an absolutely lovely bunch of people.

You don’t need to take my word for it. Just look at the How to Be Australian themed afternoon tea they put on.

If you’re wondering, I didn’t have an iced vovo. I was busy digging into the salted caramel slices, which were perfectly chewy and had no dessicated coconut in the base! A++

And in honour of the event, I wore my caramel slice earrings. I’m very on brand.

As the guest author, I decided to share some of the advice I’ve learned over the ten years I’ve been steadily developing my writing process and industry expertise.

I talked about trusting the processing, about learning to be your own editor, and about the importance of regular feedback from informed readers (ie other writers).

I also talked about project inertia.

This is what I’ve come to call the feeling when a project stalls, when I’m not working on it (for whatever reason, some more excusable than others) and then feel a lot resistance when I try to get back into it.

authors-ashley-kalagian-blunt-and-dinuka-mckenzie
With author Dinuka McKenzie, winner of the 2020 Banjo Prize

I began my current manuscript in July 2019 and it’s been through a few serious bouts of project inertia. I had to spend several months editing How to Be Australian. Then I had a two-month stretch of terrible fatigue in early 2020. (That happened right before covid hit, so I spent two months cancelling plans and staying home, and then as soon as I started to feel better, we were suddenly in lockdown.) Then I spent a couple of months doing book publicity, and then I had another 10-week stretch of fatigue.

After each of these long breaks, I really struggled to get back into my new manuscript. I felt distant from the project, and a bit overwhelmed, and there was always something else to keep me busy.

A standard creative writing tip is to write every day. For a long time, I disagreed with this. In fact, I was asked in a Q&A from the Wheeler Centre, “What’s the best (or worst) advice you’ve received about writing?” I said:

One common piece of advice is to write every day. This is nonsense. I’ve been writing seriously for the past ten years, and I’ve never managed to write every day. I have, however, interviewed more than 140 people, completed two Masters theses, written four manuscripts and published two of them. Most of that time I also had a day job, and for almost four years I’ve had a debilitating illness. Better advice: write when you can, write what excites you, keep going.

But.

In October last year, when I was really struggling to get into my manuscript draft for the fourth time, I was lucky enough to interview author Kate Mildenhall.

Kate talked about her writing process and the process journal she keeps, documenting all her thoughts around the project and its development as she goes. We also talked about writing practice, and writers who write every day.

So I decided to try it. Both the process journal and this crazy writing every day thing. I committed to working on the manuscript for at least 15 minutes every day for a month.

And seven months later, I’m still doing it, for one amazing reason: no more project inertia.

I still greatly prefer to sit down and work on my writing for at least an hour at a time, ideally two or three. I can’t get much done in 15 minutes.

But it is exceptionally helpful to create a habit of sitting down and the computer, opening the file, and getting my head into the manuscript. This means when I am able to sit down for a longer stretch, I can get straight into it.

I still miss one or two days a month, almost always because of the fatigue. But otherwise, I keep myself accountable in my process journal.

And I’ve made huge progress since that October commitment. Then I only had 45,000 words of a first draft. Now I’ve completed that draft, used it to develop a 15,000-word scene-by-scene outline, and am already 25,000 words into a new draft.

How to Be Australian Kalagian Blunt

So now I’ve started suggesting writing daily. Fifteen minutes a day can lead to a surprising amount of of progress, and spare a lot of the torture of project inertia.

I wish someone had told me that ten years ago!

Ep 20: Up against the limits of medical knowledge with author Josephine Taylor

“I was pretty well bedridden, unable to move very easily for about the first year … I’d sort of have to shallow breathe into the tops of my lungs.”

When Josephine Taylor first began to experience chronic pain, she started to reduce her commitments. She was a career woman and a mum. But gradually, she had to shut down her whole life. Meanwhile, she struggled to get a diagnosis.

  • James and Ashley Stay at Home podcast
  • James and Ashley Stay at Home podcast

Eventually the doctors concluded she had vulvodynia, chronic vulva pain lasting three months or longer that is medically unexplained. “That doesn’t mean it’s not real,” she adds. “It’s a very real medical condition.”

Josephine is a writer and freelance editor who lives on the coast north of Perth, Western Australia. She is Associate Editor at Westerly Magazine and an adjunct senior lecturer in writing. Her debut novel, Eye of a Rook, is drawn in part from her experiences with vulvodynia.

James and Ashley Stay at Home podcast

Trapped with condition, she began to learn its history and write about it. “It seemed to me very important that people understand that actually there hasn’t been a great deal of movement forward in understanding or awareness since the 1860s.”

Eye of a Rook is a novel with two narratives, both about women suffering from vulvodynia. One storyline is set in contemporary Perth, and one set in England in the late 1800s. The historical narrative includes shocking details about women’s medicine and treatment at that time, drawn in part from research into “The London Surgical Home for the reception of Gentlewomen and Females of Respectability suffering from Curable Surgical Diseases”, which opened in 1858. Taylor describes the barbaric surgical procedure, called a clitoridectomy, which is proposed in the opening chapter as the solution to one of your main characters’ suffering.

James and Ashley Stay at Home podcast

For both women, their illness affects their personality, and robs them of themselves, as well as affecting Alice’s career in Perth. We discuss how vulvodynia affected Josephine’s life, medical victim blaming, the difficulty of being diagnosed with a little-understood condition and the ongoing confusion of it, and the ‘finitude of possibility’ that chronic illness inflicts on a life.

Josephine is full of excellent advice and reassurance for anyone suffering chronic and/or invisible illnesses, about surrounding ourselves with people who believe us, and not letting our past dictate our futures.

James and Ashley Stay at Home podcast

You can listen to episode 20 of James and Ashley Stay at Home here, or on Apple podcasts, Spotify, or your favourite podcast app, and find out about our past episodes here.

Check out Josephine’s #FridayCookBook on Instagram and join her at this free Avid Reader online event with Lee Kofman on 9 February.  

This episode’s book chat
The Fifth Season by Philip Salem
Wintering by Krissy Kneen
‘The Wife’s Story’ by Ursula K LeGuin
Imperfect by Lee Kofman (who we spoke to in episode 3)
Unlike the Heart by Nicola Redhouse
Pain and Prejudice by Gabrielle Jackson
Show Me Where It Hurts by Kylie Maslen
Hysteria by Katerina Bryant
One Day I’ll Remember This: Diaries 1987-1995 by Helen Garner
In the Woods by Tana French

For more information about vulvodynia and support:
The International Society for the Study of Vulvovaginal Disease
The Australian and New Zealand Vulvovaginal Society
The Pelvic Pain Foundation of Australia
The National Vulvodynia Association (US)
The Vulval Pain Society (UK)