After contracting glandular fever as a child (aka mono), Bronwyn Birdsall ended up with such bad chronic fatigue, she missed six months of school. This was at a time when there was still significant stigma surrounding the illness.
Bronwyn grew up in Sydney. At age 24, she moved to Sarajevo, Bosnia and Herzegovina, and worked as an English teacher. The four years she spent there provided the inspiration for her first novel, Time and Tide in Sarajevo. Her writing centres around contemporary life and finding meaning in the everyday. She writes from her home on Bundjalung Country, in Northern New South Wales.
In episode 63 of James and Ashley Stay at Home, a podcast about writing, creativity and health, Bronwyn joins us to discuss her life after chronic fatigue syndrome and the writing of Time and Tide in Sarajevo, which started not as a novel, but as a memoir.
Bronwyn worked on the memoir for years before one day suddenly finding herself writing fiction. he describes how the story opened up from there.
We discuss living with a mindset of rest and recovery, moving overseas and reinventing yourself, and the question at the heart of the book – how do we find hope in a world that feels beyond repair?
Books and authors discussed in this episode – Sarah Sentilles – Burnout by Emily and Amelia Nagoski – Indelible City by Louisa Lim – The Writer Laid Bare by Lee Kofman – Songs of a Dreamer by Thomas Ligotti – A Kind of Magic by Anna Spargo-Ryan – The Unbelieved by Vikki Petraitis – The Whispering by Veronica Lando
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.
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.
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.
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.
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’smy 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.
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!
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!)
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.
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.
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.
Since getting diagnosed with chronic fatigue syndrome in 2017, one of the most helpful things has been learning specific terms that describe aspects of the illness.
I think this is partly because the existence of a given term is proof I’m not imagining what I’m experiencing. It’s real, and other people have experienced it – so much so that there’s an established name for that experience. A few examples are orthostatic fatigue, temperature dysregulation, and alcohol intolerance.
Recently I learned a new term that describes an aspect of my experience of illness perfectly. Disturbingly, I learned it while reading not about CFS, but about covid-19.
Despite the impression my social media accounts might give, I’m still really struggling with the fatigue. In January, I started the Lost Hours Project to try to quantify how much the fatigue still affects me. I track each hour I lose to fatigue – in other words, any daytime hour that I’m too sick to function.
Keep in mind these don’t include time that I am functioning, but at a slower (more frustrating) speed than I would when I’m well. Often things take me twice as long as they normally would because of physical or cognitive fatigue, or both. But there’s no clear cut way to track this.
The 110 hours I lost in February are nearly 25 per cent of an average adult’s waking hours. In other words, I spent an entire week of that month in bed. (You might be thinking, gosh, I’d love a week in bed! Until you realise that I spent that week feeling like I’d been run over by a cement truck, and still had my usual work and personal commitments piling up.)
Chronic fatigue syndrome isn’t just feeling tired or run down. It’s exhaustion combined with a roulette wheel of symptoms including body aches and joint pain. I wouldn’t wish it on anyone.
Which is why I’ve been so unsettled reading about the covid-19 ‘long haulers’.
More and more articles are coming out about people suffering a long tail version of covid-19. They’ll feel fine for a few days, and then suddenly be too exhausted to work or function, with returned symptoms like shortness of breath and a hoarse throat. For others, the fatigue has settled in and not left.
“Before this, I was a fit, healthy 32-year-old,” a woman interviewed for the Atlantic said. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.”
Ugh, I know how this woman feels. I’ve been there.
“This virus has ruined my life,” she continued. “Even reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown—yoga, bread baking—are beyond the realms of possibility for me.”
An article from SBS describes a man in New York who will feel fine for a few days, then suddenly become overwhelmingly tired and short of breath.
I wasn’t surprised when the article quoted his physician saying the man’s “ongoing fatigue is similar to what has been documented in other illnesses that cause chronic fatigue syndrome.”
“Scientists aren’t quite sure why this happens, but … it might relate to an injury to a part of our cells called mitochondria, which are responsible for generating energy.”
The physician “emphasised it was important for people experiencing these ongoing symptoms not to succumb to ‘medical gaslighting‘ where other people or the patients themselves attribute the illness to anxiety.”
“This is not in people’s heads. This is what people live every day.”
From extensive experience, it’s very difficult not to medically gaslight yourself. It’s useful to have a term for this, since I still tend to have this sort of thought distortion. I don’t necessarily attribute the illness to anxiety, but I often tend to deny how sick I actually am. Particularly if I have a few good days in a row, I start to think I can’t possibly be as sick as I’ve made out. I must be exaggerating.
But I’m not. And the covid-19 long haulers aren’t, even if they’re trying to convince themself that it must be anxiety, or even their imagination – because that would be far less frightening that the reality of having chronic fatigue.
The Atlantic reports that thousands of people are now experiencing long tail covid-19, with early surveys estimating that 60 per cent of them are aged 30 to 49.
Take care, stay safe! And if you’re sick, try not to gaslight yourself.
James and Ashley are staying at home. Partly because there’s a pandemic, partly because they’re writers, and partly because of their health. Through discussions and interviews with other writers and creatives, they’ll explore how staying at home has its benefits.James and Ashley Stay at Home is a joint venture with my wonderful co-host, James McKenzie Watson, winner of the 2021 Penguin Literary Prize. Learn more about James and the podcast below, or find the first seven episodes here.
We’ll be discussing the challenges of our efforts to write brilliant manuscripts while coping with chronic health issues, and also interviewing other writers and creatives who’ve faced similar challenges.
This is what the player for the first episode would look like, if I could embed each episode.
Instead, you can listen to episode 1 here. It introduces our major themes, writing, creativity and health. We speak about both topics through our personal experience: in addition to my chronic fatigue syndrome, James was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) in 2016. Like me, he also suffers from serious fatigue, among a myriad of other symptoms.
James is a very talented writer of short and novel-length fiction. He’s been recognised in competitions including the International InkTears Flash Fiction Contest, the Newcastle Short Story Award and the Grieve Writing Competition, and featured in publications such as Baby Teeth Journal and Brave Voices Magazine. In 2017 he was shortlisted in the Kingdom of Ironfest prize for his novel Denizen. He works as a nurse in regional NSW. Find him on Twitter or visit his website.
James is a member of my Writing NSW writers’ group, pictured here at the 2019 launch of My Name Is Revenge: Jonathon Shannon, James, me, Simon Veksner, Amanda Ortlepp and Andrea Tomaz.Episode 2 is a special episode, which features me reading the first chapter of my new memoir, How to Be Australian.
In episode 3, we launch into our interviews with Australian authors starting with Lee Kofman, author of Imperfect.
In episode 4, James grills me about writing my new memoir, How to Be Australian. (It turns out the secret to getting asked all the questions you really want to answer is to be a guest on your own podcast.)
Episode 5 features debut author Anna Downes discussing her international hit The Safe Place, as well as her experiences with postpartum anxiety.
In episode 6, James and I share the stories of how we came to be writers and share some of our favourite writing tips.
Episode 7 features British-Japanese author Katherine Tamiko Arguile discussing her debut novel The Things She Owned and the health crises that drove her to pursue a writing career.
In episode 8, we interview author Kate Leaver about her new book, Good Dog, and learn about just how excellent dogs are for our wellbeing.
Episode 9 features art therapist Karin Foxwell discussing the profoundly 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
Episode 10 gets personal: James and I explain our health conditions, discuss how these affect day to day life, and explore how illness has impacted our senses of self.
In episode 11, we discuss anxiety with comedian Anthony Jeannot.
Episode 12 features bestselling author Petronella McGovern discussing her new novel, The Good Teacher, and the allures and dangers of fringe healthcare.
In episode 13, we chat with the legend herself, author Kate Mildenhall, about the craft of novel writing, the challenges of penning a second book, and the creative anxieties that plague writers.
Episode 14 features Elizabeth Tan, author of Smart Ovens for Lonely People, discussing the public health crisis of loneliness, the personal experiences that inspired some of these stories, and an unusual but highly effective writing prompt.
In episode 15, James and Ashley share their motivations for writing, writing tips, and more.
Episode 16 features Ada Palmer, historian, composer and author, and how she’s managed to achieve so much while managing a number of invisible illnesses.
Episode 17, the last episode of 2020, highlights some of the best writing tips from the year, and is a great resource for any writer.