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.

 

 

Ep 8: Talking good dogs with Kate Leaver

Toddler and two shih tzus

Ted and Tiffany.jpgI’ve been a fan of dogs basically since I was born. Ted, the handsome furball on the right, was my parents’ first baby – I came along a little later. I guess they decided they’d rather have a second dog than a second child, because for a while, this was their little menagerie. (Eventually they added a second kid too.)

Ted and Tiffany were purebred show dogs, which meant their coats grew down to the floor. This photo is from off-season. I was raised with the pronunciation sheed-zoo, as per the American Kennel Club. I don’t know when people saying shit zoo, but I’d like to officially campaign for a rebrand.Kate Leaver on James and Ashley Stay at Home podcastMy love of dogs is why I’m especially excited for our latest podcast guest, author Kate Leaver. Kate is a journalist and speaker from Australia, and is also the author of two books. Good dog cover, author Kate Leaver, Bert,I’m been a fan of Kate Leaver since I reviewed her first book, The Friendship Cure. In it, she examines how friendship can help to alleviate the epidemic of loneliness, which competes with mental illness and sedentary lifestyles to be the worst health crisis of our time (pandemics aside). Friendship has powerful health benefits, as many scientific studies show.

Good Dog is an extension of that idea, exploring how our furry friends enrich our lives while providing numerous health benefits that researchers are only beginning to uncover. Along with the 11 stories of especially good dogs – including her own shih tzu, Bertie – Leaver explores research into the impact of dogs on human health. You can read my full review here. Kate Leaver on James and Ashley Stay at Home podcastJames also happens to be a fan of dogs.

James lives with Bonnie, an Irish wolfhound/dalmation cross. Bonnie joined James for our interview with Kate. The one downside of podcasts is their lack of visual component, so James snapped this shot of Bonnie nudging her way into the audio action. James and Bonnie.jpg
This shot allows you to better appreciate Bonnie’s spotiness. Dalmation Irish wolfhound cross dogJames, Kate and I probably could have talked about dogs for, conservatively speaking, 17 hours.

But we had so much more to talk about! Kate lives with bipolar disorder and her experiences with depression, and Bert’s intuitive ability to comfort her during difficult times, inspired her to research other good dogs.

She also speaks about the challenges her health has presented in her career. “I always found being in an office difficult, because you can’t really schedule in time to deal with your mood or your energy levels.” This led her to try freelancing.

“I wanted to give myself the opportunity to take care of my mental health,” she says.  Freelancing means being able to give herself more days when she needs them, work to a schedule that works for her, and go outside for a walk in the middle of the day.

Kate’s coped with chronic illness far longer than I have, so I asked her how she manages to have such a successful career. I was thankful to hear her say she doesn’t know how she manages it. She just keeps going as best she can, which is sometimes not very well at all.Kate Leaver on James and Ashley Stay at Home podcast
This was a huge relief , because after four years I certainly haven’t figured out any way of managing my illness either. Kate Leaver on James and Ashley Stay at Home podcast
You can listen to episode 8 of James and Ashley Stay at Home here, and find Kate’s book online and in bookshops across Australia, as well as in the US and UK in early 2021.

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 7: Stepping off the corporate hamster wheel

The Things She Owned Novel by Katherine Tamiko Arguile
Born and raised in Tokyo, Katherine Tamiko Arguile is a Japanese-British-Australian arts journalist and author. She migrated from London to Adelaide in 2008, where she now lives beside the sea. A graduate of Cambridge University, she has a PhD in Creative Writing from the University of Adelaide. Her award-winning short stories have been published in anthologies in the UK and in Australia.

In episode 7, we talk to Katherine about her first novel, The Things She Owned. The story weaves together the narratives of a mother and daughter: as a young girl growing up in Japan during and after the Pacific War, Michiko is victim to her father’s abusive behaviour, which in turn is linked to PTSD stemming from his time in the Japanese military. Meanwhile, her adult daughter reflects on her mother’s life from present-day London, where a collection of Michiko’s things – a rice bowl, a Wedgwood tea set, a knotted ring from Okinawa – mostly collect dust in the corner, along with her ashes. Arguile crafts the English and Japanese settings with vivid detail, and lovingly describes the many Japanese meals over which her characters argue and bond. Through her two female protagonists, she explores the intractability of intergenerational trauma, turning in the final chapters to Indigenous Japanese concepts of healing.

We invited Katherine on the show not only because she’s a writer, but because she’s also experienced years of chronic illness. She delves into her background and what led her to write The Things She Owned.

Katherine describes how she grew up with a chronically ill mother in a bilingual household – although when her Japanese mother and English father got married, ‘they could hardly talk to each other’. Soon they both spoke each other’s language, and Katherine grew up with two languages. She recreates this beautifully in her novel, mixing  in Japanese terms and proving a glossary.

Although she always loved reading and writing, Katherine worked a corporate career in London before two events made her turn toward writing. The first was the death of her mother, and the second was a speedboat incident that resulted in a broken back and a helicopter rescue.

‘I really did start to question what the hell I was doing, rushing around in London,’ Katherine says. ‘The accident in some ways was something going, “Hey! Just stop doing this thing you’re not meant to be doing.” And of course in hospital, I had plenty of time to think about my future.’

She feels confident in her decision to pursue a more creative life. ‘The writing has become such a purpose for me … That’s my driving force to keep myself healthy, both in mind and body.’

Listen to episode 7 of James and Ashley Stay at home here, and find Katherine’s book online and in bookshops across Australia.

 

Ep 5: The Year that Almost Killed Anna Downes, author of The Safe Place

Anna Downes The Safe Place.png
The Safe Place begins with a dreamlike escape. A young Londoner in a Ramones T-shirt and worn sneakers boards a private jet and arrives in France, where a chauffeur escorts her to a secluded luxury estate on the coast. Hidden on a forested backroad behind iron gates, the property features two mansions, an expansive garden and a central pool. Emily Proudman gazes at her surroundings in delighted disbelief.

The author, Anna Downes, is originally from the UK and now living in Australia. In a coda to the book, she describes her own journey from struggling London actor to the debut author of a major international book release. After leaving both the UK and her acting aspirations, she moved to Australia with her husband and turned to writing as an escape from postpartum anxiety.

In episode 5 of James and Ashley Stay at Home, Anna describes how even as her anxiety began to cripple her, she convinced herself she was fine. Finally, as things worsened, a friend mentioned that she gone through something similar. She “was literally the only person who said to me, ‘I’m struggling, and this is what I did.'”

Anna sought professional help, but she also took up a new creative pursuit. After leaving her acting career and becoming a mother of two children under two, part of her struggle was the feeling of her “identity crashing”.

She describes how she began writing for fun, for herself, and three years later, is celebrating the release of her debut novel. In listening to Anna, it’s clear that she channelled all of herself, her fears and passions, into her writing.

“The book is hard to put in genre pigeon hole, because part of it is thriller/horror, but Emily – she thinks she’s in a romcom,” she says. Anna is a fan of Psycho just as much as she is Mystic Pizza.

You can read my read my review of The Safe Place at Newtown Review of Books, and listen to episode 5, our interview with Anna Downes.

 

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 inspire, 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.

James is a very talented writer ofScreen Shot 2020-06-07 at 7.25.48 pm 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. Next month, we’ll feature Anna Downes, author of the soon-to-be-released psychological thriller, The Safe Place. Make sure to subscribe on your favourite podcast app.

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.

And in episode 7, we interview British-Japanese author Katherine Tamiko Arguile about her debut novel The Things She Owned and the health crises that drove her to pursue a writing career.

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.

Life: Cancelled

Author Ashley Kalagian Blunt with rainbow bookshelvesI’ve been really sick.

It’s not COVID, just a bad stretch of my normal chronic fatigue.

Usually I try to find the humour in things. I use humour to cope with life. But over the past few years, life seems to be working hard to beat the humour out of me.

I started doing stand-up comedy in 2015, and was doing it regularly in 2016, just figuring it out. When I told people this, they often said, ‘That’s so brave.’ For me it wasn’t brave. It was raw fun. Even when no-one laughed – and there was definitely at least one occasion where I spoke for five minutes to a stone-silent audience – I had a good time.

Then one day I found myself dreading going to stand-up. It felt like too much effort to get myself out in the evening, to memorise a new bit. So I didn’t go. At the time I thought I’d abruptly lost interest in this thing that I had really loved. Looking back, this is when my chronic fatigue symptoms really started to ramp up. Stand-up was the first thing the illness took from me.

A friend texted on Friday. ‘You have been an expert at social distancing for a few years now — any tips to share? How are things down under other than a TP shortage?’

And I tried to think of something funny. But I couldn’t.

‘Look, honestly, the only tip I’ve got is to understand how much grief is part of it,’ I wrote. ‘If it’s just two weeks, maybe not so much. But if you’re forced to stay home and miss things that you’ve looked forward to, miss time with friends who you might not have much time left with, miss events that you may have spent months planning, grief will be part of it. Naming it helps.’

For the past four weeks, I’ve been feeling too unwell to function, falling behind, then getting just well enough to almost catch up before I fall behind again. I’ve slipped back to where I was about a year ago, health-wise.

Meanwhile, the world has become as unpredictable as my health. Everything seems precarious. Is there any point planning future events? On the rare occasion I’m well enough to go out with my friends, it safe to do so? Should I barricade myself behind a metre-thick wall of toilet paper?

I know I’m not the only one who feels this way. For people like my husband, it’s COVID-19. For me, it’s COVID-19 to power of three years of CFS. For you, maybe it’s worse.

I sort of want to give up. Just go to bed, pull my nine-kilogram blanket over my head and stay there until I’m well, until society stabilises. I’m worn out.

Stay well, wonderful people.
xo