New Year’s resolutions for 2021

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.

At the start of 2020, I sat down in all earnestness and made some actual, genuine resolutions (as opposed to my 2019 resolutions, which included climbing Mt Everest in a Pikachu onesie).

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.

Wishing you a healthy 2021.
xo

Ep 16: Living in different universes with Ada Palmer, author and historian

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.

You can listen to episode 16 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.

Ep 14: Moulding stories like clay with Elizabeth Tan

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.

You can listen to episode 14 of James and Ashley Stay at Home here, or your favourite podcast app, and find out about our past episodes here.

Ep 10: Progressive weakness and loss of sensation

In episode 10 of James and Ashley Stay at Home, we get real serious – or as serious as it’s possible for James and me to get.

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).

It’s been a big podcast week! Two interviews about How to Be Australian were also released.

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?

The other interview is with Paul Barclay for ABC Radio National’s Big Ideas.

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.

Order the book now from
Your local bookshop | Booktopia | Amazon | Outside Australia

Ep 9: The healing power of creativity

James and Ashley Stay at Home podcast cover quote
When we invited Karin Foxwell on James and Ashley Stay at Home, she said, ‘my work as an art therapist is the best job in the world.’

Art therapy is a creative form of counselling, as Karin describes. Her work focuses on military and emergency service personnel who live with PTSD as an after-effect of trauma incidents during their service.
Woman in art studio
In this episode, we discuss how Karin got into art therapy, why it can be so successful at treating trauma symptoms, and its potential for use in the management of chronic health issues.

Karin’s therapy program is part of The Road Home, an affiliate of The Hospital Research Foundation in South Australia, and part of the Australian Centre of Excellence for Post Traumatic Stress.

According to InDaily, “90 per cent of The Road Home’s art therapy participants report positive changes in their quality of life, relationships, general psychology, and overall symptoms related to PTSD.”
Art therapist 4.png
You can listen to episode 9 of James and Ashley Stay at Home here, and find out more information about The Road Home on their website.

 

 

Falling victim to medical gaslighting

Triptych of an exhausted woman sleeping
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.

Lost hours 2020
January: 89 hours
February: 110 hours
March: 119 hours
April: 87 hours
May: 63 hours
June: 90 hours
July: 60 hours

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.
xo

 

Ep 6: Our Man Booker contenders

James and Ashley Stay at Home podcast
Episode 6 of James and Ashley Stay at Home features James and I sharing our early experiences as writers – which always make for entertaining stories – and three tips we’ve learned along the way. You can listen to it here.

James wrote his first novel at age seven. Frankly, it sounds like a masterpiece of contemporary Australian realism, akin to Christos Tsiolkas’s The Slap, but with less slapping and more lost hire car keys.

Even at that age, he was conscious of the need to work hard to attract readers to his writing, and he shares a dramatic story of how he employed his four-year-old brother as a spokesperson. This strategy didn’t work out, probably because it was heavy on audience abuse and profanity.

We’d also love you to weigh in on this hot debate: when James’s dad managed to get one of his manuscripts in front of a publisher (this was a few years later, when James had acquired the worldliness of a teenager and had years more writing experience), he received the feedback ‘James’s writing should be encouraged.’

I thought this comment was kind, but James understood it as ‘James’s writing shouldn’t be explicitly discouraged … but maybe buy him a tennis racket or a worm farm.’

Like James, I started writing early, and leapt into my first novel at the age of 14. Thankfully no-one in my family had any publishing industry contacts to show it to when I declared it finished four years later. For reasons lost to time, I called the novel Infernoatia. It was about killer bees from Mars (uh-huh, makes perfect sense, I hear you thinking).

It was set in 2020, which, back in 1997, must have seemed like THE FUTURE. Obviously we’d have humans on Mars by then.

To give you a taste of how immensely terrible this book was, here is the actual opening, from the printed-out copy I still have in a trunk at my parents’ place, complete with the book cover my dad designed.

The Earth, our planet; home to all creation as we know it, yet swiftly racing towards its unavoidable end. As it slowly orbits the sun, tracing the same pattern around our star as it has countless times before, its life forms, and with them their technology and knowledge, continue to evolve and expand, ever growing to meet the needs of a greedy civilization that believes it has money and resources to burn. But if, in the distant future, all life on Earth is threatened, will it be a superior race who lives millions of light years away, hidden from view of our best astronomers and astronauts, who have finally come to conquer over what would seem such low forms of uncivilized life for nothing more than their own personal amusement, or will it be that we ourselves erupt into war over our minimal and virtually insignificant differences and eventually destroy everything in battle?

Although both these suggestions could be quite possible, or even become reality someday, it seems more likely that a careless mistake, an overlooked error, one simple flaw in a larger, more elaborately worked plan, will one day inadvertently throw the whole world on a path of ultimate destruction, and as the clock begins to count down to our demise, the people of our planet will be forced to ban together to save themselves against the wrath of our sophisticated, highly developed technology, and widespread knowledge or perish.

Prologue
August 18, 2020, 4:09 PM, INFINITY III, MARS

Space is deep. And black. Unlike being on a planet, it doesn’t matter where you look, there is always more black space. No horizons, no coast lines, no mountain ranges. Just a thick black fog dotted by infinite numbers of shining yellow stars. A vast universe full of burning suns, each which may be home to a cluster of tiny planets, which may each have their own groupings of moons which carefully orbit them. And then there are the comets, asteroids and meteors that wander endlessly past the moons, planets and suns. A vast universe full of places to discover and explore, where you could spend an eternity, and barely begin. …

After the bees arrive on Earth (eventually the actual story gets underway), each chapter opens with a global death count. Which, now that I think about it, feels very 2020.

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Listen to episode 6 here and please rate and subscribe to help us reach more listeners.

Ashley
xo

 

Ep 4: ‘Not hiding my scars anymore’

‘I didn’t die because my parents bribed the surgeon that was supposed to operate on me not to operate on me … He had a nickname of The Butcher.’

In episode 3 of James and Ashley Stay at Home, we speak to author and writing teacher Lee Kofman about her creative non-fiction book Imperfect: How Our Bodies Shape the People We Become.

James and Ashley Stay at Home episode 3

From her website: ‘By the time she was eleven and living in the Soviet Union, Lee Kofman had undergone several major operations on both a defective heart and injuries sustained in a bus accident. Her body harbours a constellation of disfiguring scars that have shaped her sense of self and her view of the world. But it wasn’t until she moved to Israel and later to Australia that she came to think these markings weren’t badges of honour to flaunt but were, in fact, imperfections that needed to be hidden away.’

Conservatively speaking, I could discuss this book with Lee for nine straight hours, but James and I managed to keep our chat to 45 minutes.

We discuss how her scars affected her growing up, stories from the many interviews with people with diverse bodies that feature in the book, and how her self-perception has shifted through the process of writing and promoting the book.

Lee is the author of five books, including Imperfect, a blend of memoir and cultural critique, and the memoir The Dangerous Bride. She is co-editor of Rebellious Daughters and editor of Split, an anthology of personal essays. Imperfect was shortlisted for the 2019 Nib Literary Award.

You can listen on Apple PodcastsStitcher, or via the website or any podcast app.

 

Podcast: James and Ashley Stay at Home

James and Ashley Stay at Home podcast

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, they’ll try to build fellowship and entertain, or at the very least, explore how staying at home has its benefits.James and Ashley Stay at Home podcastJames and Ashley Stay at Home is a new podcast, a joint venture with my wonderful co-host, James McKenzie Watson. 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 who have done the same.

Podcast player screengrab

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 the podcast and our major themes, writing 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.

Screen Shot 2020-06-07 at 7.25.48 pm

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.Writers group with six people holding booksEpisode 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.

Nine headshots of podcast guest interviews

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.

You can listen to James and Ashley Stay at Home via the website, or on SpotifyiTunes, or wherever good podcasts live.

Ashley
xo

PS. Looking for more great writing podcasts? Writing NSW has you covered.