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
Launched in 2017, the Penguin Literary Prize was established to find, nurture and develop new Australian authors of literary fiction.
I’ve read a draft of Denzien and loved it, and I can’t wait for it to be out in the world next year. In the meantime, I thought I’d ask James to introduce the book. And then while I was at it, I asked a bunch of other questions.
Ashley: What is Denizen about? James: Denizen is an Australian gothic/literary thriller that explores rural Australia’s simultaneous celebration of harsh country and stoic people – a tension that forces its inhabitants to dangerous breaking points. In it, a volatile eight-year-old in Western NSW struggles to subdue the chaos in his head, unaware of how profoundly his actions will one day affect his own fatherhood.
A:When did you start writing it? Do you remember the day you started? J: Like many of my early manuscripts, Denizen had its origins in a home movie. As an adolescent, one of my creative outlets was short (and far too long) film – a lot of which were feature-length epics whose production and post-production scales go a long way to explaining why my year ten attendance rate was 40 per cent. My earliest ideas for Denizen were that it would be based loosely on a 90-minute film I made when I was 15, called The Creek.
In 2015, when I was 23, I woke up one day to find that I couldn’t feel my feet. Soon after, I was in Royal North Shore Hospital being treated for Guillain Barre Syndrome, a progressive neuropathy that causes rapid paralysis. Part of the work up to diagnose GBS is a lumbar puncture, after which I had to lay flat on my back for two hours. I distinctly remember being rolled onto my back, staring at the ceiling and thinking, “well, now seems as good a time as any to start planning this novel.” I spent the next two hours working it through in my head until I had a clear idea of what the book I would look like. I started the first draft almost as soon as I was discharged from hospital.
In the five years and six drafts since then, Denizen has evolved from being a recognisable adaptation of The Creek into something very different. That said, evidence of its origins remains, particularly in the middle act.
A: What was the most difficult part of writing Denizen? J: I struggled a lot with characterisation, which I suppose is an expected challenge when writing from the point of view of a deeply flawed protagonist. It took a lot of work to make Parker, the main character and narrator, someone readers could empathise with. In the end, realised it was more important to make him relatable than likable, and so I focused on that.
A: One year into James and Ashley Stay at Home, what’s the best episode for listeners to start with? J: I’m very biased, but whenever anyone asks me this question, I tell them episode 23. In it, Ashley and I interviewed David Vann, one of my all-time favourite authors and literary heroes. The conversation was everything I’d hoped it would be – a raw and fascinating exploration of his motivations and process, peppered with his insights into literature, philosophy and politics.
A: What’s your favourite Australian animal? J: The Australian magpie. They’re only bastards if they’re nesting and you’re in their space, and even then, they’re just protecting their babies. They’re gorgeous. They have such a beautiful song. Have you ever seen a magpie sun itself? They lie on their bellies with their wings outstretched – it’s hysterical. And they play like dogs do! They lie on their backs and wrestle with each other. Young magpies look so ridiculous and adorable with their fluffy grey baby feathers, and their weird, spherical bodies. They’re incredibly clever and resourceful. They’re a lot more than just that vicious, swooping bird that takes people’s eyes out. I’d probably swoop at you if you rode a bike through my house too.
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
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.
She recounts her journey from ambitious student to junior doctor to patient suffering burnout and depression in her new memoir, Emotional Female.
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.
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.
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.
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 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.
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.
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.
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.
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
If 2020 taught us anything, it’s that there’s no point making plans. I planned all kinds of things last year, including that I would be in Canada over this holiday season to finally visit my family after four years of CFS making the journey impossible.
Instead I’ve spent three damp and soggy holiday weeks in New South Wales, mostly squelching around my neighbourhood, much like I did all year.
I planned to increase my micro swims to tiny swims, and to jump in the pool without hesitation. I was doing great at this in January, but then in February my CFS got much worse, and I wasn’t able to swim. I kept trying to get back to it, but then covid closed the pools, and I got sicker.
Another resolution was to read more, which I’d assumed I’d be able to do as my health continued to improve. But it really didn’t. My CFS recovery tanked in February and March, and again in August and September, and I felt like I spent the rest of the year trying to recover from those months, just to get to where I’d been in January.
I also wanted to develop my listening skills and ask better questions, but between CFS shutting me down and covid shutting everything else down, I gave up on this. If anything, I’m less inclined to ask any questions when I go out these days.
There was one resolution I managed, however: to have a first draft of my new novel by 31 December. I’m happy to tell you I’m already into draft 2, and I’m very excited about it.
Also in 2020 I completed the Lost Hours Project. Every day, I recorded how much time I lost to illness, ie how much time I spent in bed during the day rather than up living my life. I was very optimistic at the start of the year, so I thought it would be an encouraging exercise. I thought the numbers would gradually improve.
I lost 1024 hours last year. If you assume 16-hour waking days, that’s 64 days – more than two months.
But I also realised that this project wasn’t working. I’d wanted to quantify the experience of illness, to find a metric to compare days and months. This isn’t it. In September I lost 89 hours to chronic fatigue and in October I lost 85. But those two months were wildly different experiences. In September (and August) I felt like I was drowning almost every waking minute. In October I was quite functional when I wasn’t in bed, and I was able to do cognitive work without fighting through an ocean of misery.
It turns out it’s not so much the lost hours that matter (though of course they do), but the quality of the hours that are not lost. And that’s much harder to quantify.
I know what you’re thinking – yeah, but look at December. You must be feeling a lot better! Not quite. I was just on holidays. My office closed for the holidays on 16 December, and when I can spend 15 hours a week relaxing instead of doing intense cognitive work, my symptoms become much milder.
So I decided not to continue the Lost Hours Project in 2021. I’m not convinced the data is very useful, and it’s a bit depressing.
Some good news: today I jumped in the pool without hesitation and did a micro swim. If I don’t end up collapsing for several hours in the next two days, I might even do that again.
Still, I refuse to make plans or goals this January. I’m sick of it. I’m going to write a new draft of this book as fast or slow as suits me on any given day.
Actually I do have one resolution I’m very keen on, and that is to use the word absquatulate as much as possible.
Say that out loud and tell me it isn’t the most fun you’ve ever had.
It means to leave abruptly, which is something that can be worked into most conversations, even if I have to do more than my share of absquatulating to ensure I can bring it up.
In episode 16, James and I interview author and historian Ada Palmer about living with chronic pain and studying the past to imagine the future. She offers excellent advice to those managing invisible illness, while also acknowledging how hard it can be.
Ada is an author of science fiction and fantasy, a historian at the University of Chicago, and a composer and musician. Her book series, Terra Ignota, published by Tor, explores a future of borderless nations and globally commixing populations. The first volume, Too Like the Lightning, was a finalist for the Best Novel Hugo award. Ada teaches history at the University of Chicago, studying the Renaissance, Enlightenment, heresy, atheism, and censorship.
Ada has achieved all this and more while living with a number of invisible chronic illnesses, including Crohn’s disease and polycystic ovarian syndrome.
“There’s nothing more similar than history and science-fiction,” Ada says. “It’s studying long periods of time in which societies change, whether future or past.”
In our interview, she describes her academic research as the history of worldviews, and how she uses her research into the past to imagine human societies hundreds of years in the future, asking, “How does the future think about us?”
Ada also discusses how her Crohn’s disease and polycystic ovarian syndrome have resulted in chronic, sometimes crippling pain, and how she’s learning to cope with living with invisible illness.
“When it’s the same pain in the same nerves over a long time, it causes cognitive trauma damage.”
Ada describes coming to understand herself as disabled as “a powerful and interesting turning point”. The first time that she raised the topic with her university students, she was surprised by their enthusiasm to discuss and learn more.
“It helped me realise how powerful it was as a conversation, how powerful it was for the students for that silence to break, and how powerful it was for somebody’s who’s in a role-model position to talk about it with them.” Her students’ support gave her the confidence to speak to her department head and colleagues about her illness and its challenges.
In this episode, we also talk about authors Arkady Martine, Claire G Coleman, Gene Wolfe, Neil Price, Junji Ito, Julian Barnes, Anita Heiss, Evelyn Araluen, and of course, Voltaire and Diderot.
Australian author Elizabeth Tan’s second short story collection, Smart Ovens for Lonely People, is full of humorous and poignant stories laced with pop-culture references and techno-slang, and set in an uncertain dystopian future or surrealities.
Elizabeth’s comedy leaps out from story titles such as ‘Shirt Dresses that Look a Little Too Much Like Shirts so that It Looks Like You Forgot to Put on Pants (Love Will Save the Day)’ and ‘Happy Smiling Underwear Girls Party’. This belies their cutting emotional depths, the varieties of loneliness depicted, and the incisive exploration of technology’s ability to isolate us while keeping us evermore connected. The book, which came out earlier this year, just won the 2020 Readings Prize for New Fiction.
In comparing Smart Ovens for Lonely People to Tan’s first collection, Rubik, Cher Tan writes: “Sardonic, gentle observations on cultural anxieties as mediated by techno-capitalism have solidified as Tan’s ‘personal brand’, but the terrain is more fantastical, more mischievous.”
One of the themes that links the stories in Smart Ovens for Lonely people is loneliness, but it’s often a special kind of loneliness – loneliness within relationships, loneliness without necessarily being alone. An affecting line from the title story sums this up: “Having someone who loves you doesn’t exempt you from wanting to die.”
Perhaps not surprisingly, loneliness competes with workplace stress, mental illness and sedentary lifestyles as one of the most pressing health epidemics of our time.
Listeners will remember our interview with Kate Leaver in episode 8, when we discussed her new book about how good dogs are for our health. In her first book, The Friendship Cure, she offers some compelling evidence for the dangers of loneliness, drawn from a meta-analysis of scientific research. It concluded: “Loneliness is more dangerous than smoking 15 cigarettes a day and deadlier than obesity … It can tighten our arteries, raise our blood pressure, increase our rates of infection, diminish our heart health, and lead to higher rates of cancer. Lonely people develop tumours faster, have weaker immune systems and lower thresholds for pain.”
We also ask Elizabeth to discuss a story from the collection in terms of its evolution from idea to final draft, which leads to a fascinating discussion of her use of a writing prompt called logogenetics.
And we discuss a whole bunch of writers, including Brooke Davis, Shaula Evans, Alexander Chee, Fiona Wright, Stephen King, Yumna Kassab, David Vann, Laura Bates, and Laura McPhee-Brown.