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.

Screen Shot 2020-07-26 at 8.28.57 pm.png
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 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.

Conversations with Friends

Conversations with Friends by Sally Rooney
Conversations with Friends showed up as a surprise in the post. A friend sent it to me.

Sally Rooney has won multiple literary awards. I’d read her second book, Normal People, earlier in the year, when everyone was talking about it. And while I recognised the writing as brilliant (and so crisp and well wrought, Rooney doesn’t even bother with quotation marks), I didn’t enjoy the book. I don’t enjoy stories about relationships, about love and affairs and divorce and grief. My favourite books generally have at least one murder in them, and no-one gets murdered in Conversations with Friends. Not to spoil it too much, but no-one even contemplates hiring an assassin.

The whole time I was reading it, I wondered what had made my friend choose this book, from the millions of books out there. Even though this book was very much not my kind of book, at the same time it was so well-written it was hard not to find things to appreciate on every page, turns of phrase and insights into the human condition. The main character has embarked on a writing career, and later on is diagnosed with a chronic illness. Many of Rooney’s observations rang true for me. I’ve listed some of my favourites here.

“I had started reading long interviews with famous writers and noticing how unlike them I was.” (Does every aspiring writer do this?)

“I feel like shit lately, she said … You think you’re the kind of person who can deal with something and then it happens and you realise you can’t.”

“Everyone’s always going through something, aren’t they? That’s life, basically. It’s just more and more things to go through.” (This seems especially true this year.)

“After that I put some cold water on my face and dried it, the same face I have always had, the one I would have until I died.”

“I wanted things for myself because I thought they existed.”

“I felt as if I’d glimpsed the possibility of an alternative life, the possibility of accumulating income just by writing and talking and taking an interest in things. By the time my story was accepted for publication, I even felt like I’d entered that world myself, like I’d folded my old life up behind me and put it away. I was ashamed at the idea that Bobbi might come into the sandwich shop and see for herself how deluded I had been.”

“I had the sense that something in my life had ended, my image of myself as a whole or normal person maybe. I realized my life would be full of mundane physical suffering, and that there was nothing special about it. Suffering wouldn’t make me special, and pretending not to suffer wouldn’t make me special. Talking about it, or even writing about it, would not transform the suffering into something useful. Nothing would.”

“Gradually the waiting began to feel less like waiting and more like simply what life was: the distracting tasks undertaken while the thing you are waiting for continues not to happen.”

Those last two quotes seem to sit inside me. Nothing makes my suffering useful, and often my life feels like filling time until I get well. I talk all the time about the things I will do when I’m well – running and hiking and dancing, working a normal eight-hour day. Sometimes I see people out for a run and I become so sad and resentful.

I hope the things you are waiting for happen for you. And in the meantime, I hope your friends post you books.
xo
Ashley

 

Podcasts to see you through

As you know, giant sea monsters have attacked our cities. While it’s not clear how many people they’re eating, it is clear that the safest thing to do is stay inside.  Ashley Kalagian Blunt with Eggpicnic artWhile you’re inside for the foreseeable future, you might as well listen to some high quality podcasts.

Lately I’ve been trying lots of new podcasts, and finding it harder and harder to get hooked into something. So you know if I’m recommending these, they must be excellent – assuming, of course, that you share my preference for true crime, comedy, and the bizarre.

  1. Women & Crime
    My latest favourite, this ongoing series hosted by the criminologists behind Direct Appeal (which I shared in my previous podcast round up). Each episode is a standalone story focussed on women “who have been victims of crime, those who have committed crimes, and those who are involved in the criminal justice system through their work.” One episode traces the story of Juliet Hulme and Pauline Parker, two teenages from New Zealand who committed a murder; one of the killers went on to become the bestselling crime novelist Anne Perry.
  2. Free to a Good Home
    There are so many great podcasts that offer incredible learning opportunities. Unfortunately a lot of the time, my brain isn’t well enough to learn, either because of my chronic fatigue (poor concentration is one of my cognitive symptoms) or, more recently, because of the world falling apart. So instead I listen to sheer nonsense. High quality nonsense can be calming, and there’s no higher quality nonsense than Free to a Good Home. Sydney comedians Ben Jenkins and Michael Hing, along with a revolving door of guests, read bizarre classified ads and speculate about the circumstances that led to their posting. A sample of one of my favourite ads: “Get paid to kick a guy in the balls!” Like I said, the best kind of nonsense.
  3. How Did This Get Made?
    American actors Paul Scheer, Jason Mantzoukas and June Diane Raphael discuss some of the worst movies ever made, from so-bad-they’re-good movies, like Space Jam and Chopping Mall, to the purely unwatchable. You don’t need to know the movies, though watching the trailer enriches the listening experience. Once again, this is pure meaningless nonsense, which means I can put it on, relax, tune out, and fall asleep. I particularly enjoy the show’s sense of ritual, from the way the live shows open, to the reading of five-star Amazon reviews for each film at the end.
  4. Dragon Friends
    More nonsense: a Dungeons & Dragon comedy podcast. I have no interest in D&D, and heard about this podcast and the Sydney-based live show for years without trying it. But after I listened to all 108 episodes of Free to a Good Home, I thought, ‘You know what would make my life better? More Ben Jenkins and Michael Hing.’ Who happen to be on the cast of Dragon Friends. The story is continuous from season one, with the first and fifth seasons being my favourites. In an alternate reality, where I’m healthy and able to apply my brain more productively, I’m not sure I would have ever listened to this. But as a distraction from the current reality, it’s perfect.
  5. This Is Actually Happening
    While the episodes can be hit and miss, the concept and format of this show is fascinating. With no introduction or commentary from a host, the anonymous guest of each episode describes a personal experience, such as surviving a murder attempt, or having a friend die on a hiking trip, or having a mental breakdown.
  6. Hunting Warhead
    This six-part series traces the investigation of organised child abuse on the dark web, and how law enforcement agencies from around the world are meeting the challenges of tracking criminals without borders.
  7. The Knowledge Project
    When I am well enough to learn, absorb and reflect on new ideas, I enjoy the Knowledge’s Projects longform interviews with experts in a variety of areas of human knowledge. “Through conversations, we are able to learn from others, reflect on ourselves, and better navigate a conscious life.”
  8. Detective Trapp
    This miniseries centres on the lone female detective on Anaheim’s homicide squad, Julia Trapp, and one of her biggest cases: “When a young woman’s body is found at a trash-sorting plant, Trapp learns the murder may be linked to the disappearance of three other women in nearby Santa Ana.” Trapp is well-deserving of this in-depth profile of her life and work.

And if you miss me, you can always listen to this recent episode of The Bookshelf, in which I chat about American author Kiley Ried’s new novel Such a Fun Age.

Take care, wonderful people.
xo

*Bird art by Eggpicnic

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