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
Nash is not only the owner of a bad-ass mononym, he’s also an artist and now first-time author, and the latest guest on James and Ashley Stay at Home.
A Sri Lanka-born multi-disciplinary designer and artist, Nash has been based in Melbourne since 2012. His work is both cynical social commentary and an account of his personal experience as an immigrant – the ‘other’ in any society.
His first book is What to Expect When You’re Immigrating, and James and I were delighted to talk to him about the book, his career as an artist, his own experience of immigration, and how Vegemite tastes like rotten chocolate.
Nash is a funny guy, which is why we wanted to talk to him about how laughter can positively impact your health. According to the Mayo Clinic, laughing can improve your immune system, relieve pain, make it easier to cope with difficult situations, and improve your mood. This episode is full of laughs, and how they can also help overcome the challenges of talking to others about sensitive topics.
What to Expect When You’re Immigrating is out now, and you can find out more about Nash and his upcoming events on Instagram.
“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.
Petronella is a domestic thriller author and editor who grew up on a family farm outside Bathurst, NSW. After living in Canberra for a number of years, she moved to Northern Sydney where she now lives with her husband and two children. Petronella’s first novel, Six Minutes, was published in 2019. Her second book, The Good Teacher, came out in September.
Set in a beachside suburb of Sydney, The Good Teacher centres on a young girl undergoing treatment for a rare form of cancer and the school teacher who dedicates herself to helping the girl and her widowed father. It’s a fast-moving, unpredictable plot that urges readers to think about the motivations for compassion, and the desperate measures some people take to improve their health.
While researching, Petronella learned that the original snake oil didn’t contain any actual snake oil.
We discuss alternative healthcare, Petronella’s writing process, her decision to set the book in a fictional suburb, and the challenge of setting the next book in the post-covid world.
Plus, we ask Petronella about her new puppy, Oakley! James and I are big fans of dogs, as we shared on our episode with Kate Leaver, the author of Good Dog. It took Petronella and her family much longer to get a dog than they anticipated – another consequence of the pandemic was a shortage of puppies and dogs.
In episode 11 of James and Ashley Stay at Home, we talk to London-based comedian Anthony Jeannot about getting into stand-up comedy (and what everyone says when you tell them you do stand-up), along with tips for anxiety management.
It was only after Anthony quit six jobs in four months that someone suggested he might be struggling with anxiety and perhaps should seek help for it.
Each time he took a new job, he convinced himself that he was underqualified for the role. Then he quit, found a more junior role, and started the process over.
Mental illness can be a powerful form of self-gaslighting, much like with chronic fatigue. The sick brain shouldn’t be trusted to evaluate itself, but as James points out: “If you can convince yourself (that you’re fine) so successfully that you’re convincing other people, then why would they bother digging any deeper?”
After coping with anxiety for years, Anthony felt (slightly) better prepared than most people when the covid pandemic started. We talk about the ongoing struggle of illness management, and also how gifts from Santa can set up expectations about life.
We talk about our respective diagnoses and how these illnesses erupted in our lives. James has chronic inflammatory demyelinating polyneuropathy, a neurological disorder that’s quite rare.
CIDP has had a significant and ongoing impact on his life, but James is determined not to make it part of his identity. His challenges in even speaking about it are why it took us three separate attempts over multiple months to record this episode.
And while this episode was recorded remotely as usual, we actually got to hang out in person in Coonabarbran, proving that we don’t stay at home all the time (even if it often feels that way).
The first, with superhost Dani Vee of the Words and Nerds podcast (which is coming up to 200 episodes), is possibly the most cross-cultural Australian/Canadian conversation imaginable, with a strong focus on the weather and spider stories.
Dani shares an excellent spider story that settles one of the great Aussie debates: whether or not hunstmans bite. She also shares a story about visiting family in the Netherlands, who announced, “We’re all going to the beach today because it’s 16 degrees!” As a Canadian I can imagine myself saying this. As an Australian, I think it’s nuts.
As someone who has grown up in Australia, it was such an insight to see how we’re perceived from the outside.
Dani Vee, Words and Nerds episode 196
Dani also asks what is perhaps my favourite question ever: why do you write?
This in-depth discussion gets into Australia’s cultural quirks, the concept of belonging, the importance of uncovering and acknowledging buried histories, and of course, the Hollywood kookaburra con.
We also talk about adulthood, and get into the core of the book: ‘Part of the process of really settling into adulthood was realising that these images I’d held in my head, the things that I’d believed were going to make me happy — were not actually going to make me happy.’
Paul asks a great question about my search for identity in Australia, and how it connects to a childhood spent moving around.
Something had happened that had disrupted my ability to belong. And I think that’s partly what propelled me to go live in places like South Korea and Peru and Mexico, because of course I didn’t belong there, that was obvious to everyone, and we could just move forward from that understanding.
If these conversations make you keen to get into How to Be Australian, you can get a copy now wherever you are in the world.