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

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.

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

The Lost Hours Project

This is my fourth year with chronic fatigue syndrome. I’m so much better than I was, and I’m still so far away from reliably good health.

Because CFS is an invisible illness, and because I sometimes post pictures of myself out doing things, it’s understandably hard to reconcile how sick I still am with the public image I create.
Person with invisible illness sleeping
I understand this – it’s hard even for me sometimes. This week I had five very good days in a row, and caught myself thinking, for the ten-millionth time, ‘if I feel this good now, how could I go back to feeling sick? This must be the end of it.’

On Friday I made a list of things I wanted to get done this weekend. It wasn’t an overly ambitious list, just the usual getting priorities organised. It did include a few important things, like working on the copy edit for my new book. I was also hoping to write a fresh interesting post for y’all.

By noon on Saturday, my body was not having any of it. I spent the rest of the weekend curled underneath my weighted blanket. I have no idea how this week will go.

This year I decided to track how many hours I lose each month to illness, as a way of sharing the reality of chronic fatigue syndrome, and also as a way of (hopefully) showing my erratic but gradual improvement between now and December.

I’m doing this now in part because the number of hours will be tolerable to calculate. In the past they would have been too depressing.

In January I lost 89 hours. If you assume the average healthy adult should have 16 waking hours per day, then in January a healthy person should have had 496 waking hours. I lost nearly 20 per cent of the month, and that’s doing really well compared to previous years.

In other words, I lost 1 in every 5 days and I can still call that ‘doing really well’.

The numbers help, because even the photo can’t convey the reality. It doesn’t show the achy, flu-like symptoms, the cognitive struggle, the hours leading up to this moment that I’m still calling ‘productive’ even though I was struggling to hold myself upright, to think straight.

You can follow the lost hours project via Instagram. Whatever else is happening for you, I wish you good health. 

Ashley
xo

Resolutions I sincerely plan to achieve in 2020

I started last year with a pack of lies. Ashley Kalagian Blunt, author
I told you that, because of my chronic fatigue, I wasn’t going to set any genuine new year’s resolutions. Instead, I made a list of absurd resolutions that I intended to fail at –climbing Mt Everest in a Pikachu onesie, catching a serial killer, and growing a third arm.

That last part was true – I didn’t achieve any of those resolutions. I don’t even own a Pikachu onesie.

The insincere part was that, after the first few weeks of having no ‘real’ resolutions, my poor goal-oriented brain got desperate. It loves setting challenges and tracking progress, hence why I can break down my annual reading stats, why I have a list of every book I’ve read in the past 19 years, and why I can show you exactly how many steps I’ve walked since 2018. Tracking my steps is part of my chronic fatigue recovery process; graphing them is not. (But it helps!)

So in mid-January, I quietly skulked off and made a secret three-point plan for the year. It looked like this:

  1. Launch and promote, my first book, My Name Is Revenge
  2. Submit my completed manuscript to publishers ✓
  3. Write the first draft of a new novel, 70-80,000 words

Over the year, I steadily chipped away at all three goals as my fatigue allowed. Some months I could barely do anything, and I let myself be okay with that because I had told everyone that I was planning to fail at my resolutions.

But when I was well enough, I tried to make the most of my energy and work only on those goals. The first two went really well. (And boy do I have the spreadsheets to prove it!)

I made it 50% of the way through goal number 3, meaning I have 40,000 words of a new novel draft. They are 40,000 terrible words, but the machinations of a plot are tangled up inside them.

Normally I’d be disappointed that I didn’t complete all three goals. In fact, I was on track to complete goal number 3 by the end of the year, but something interrupted me. And for once, it wasn’t illness.

But for that news, and the 2020 resolutions that go with it, you’re going to have to wait.

Wishing you an excellent year ahead,
Ashley
xo

 

Hollywood’s great kookaburra con

Vivid lights on Sydney Harbour Bridge, blurred24 May 2018 [journal excerpts]
In the latest Jurassic Park, in the first establishing shot of the jungle, there’s the sound of a kookaburra call. We’re supposed to think it’s monkeys. I’ve noticed this in other US films as well. So I finally looked it up online and yes, this a Hollywood trope, the kookaburra call used for jungle scene setting. At some point, some Hollywood sound tech decided that kookaburras sounded more like monkeys than monkeys themselves do, and I was part of a generation raised with that lie.

Steve and I were sitting on the balcony discussing this today when a kookaburra flew right past, laughing! I’ve never seen a kookaburra fly that close to our apartment; usually they’re across the valley at least. But also, the timing.     

1 June 2018
Quite confident the bus driver this morning had never driven a bus before. Or any other vehicle. At one point before the last stop, he looked back, as if to check that everyone had gotten off. He gave me a really heavy look, then turned forward and continued with the route, as if my presence had foiled his plan to abscond with the bus.

4 June 2018
I feel down today. Not fatigued, just disengaged. I don’t know why. Self-doubt, maybe. Phoniness. So many useless feelings. Also there were weevils in my breakfast.

20 June 2018
I hate socks. Does anyone like them? Who wants cloth tubes twisting around their feet and crushing their ankles?

26 June 2018
Conversations about chronic fatigue
Me: It’s hard because I used to be very social and active.
Woman at social gathering: And that’s why you’ve got chronic fatigue.
Me: Uh …

At the pool, Steve swimming, me sitting on the edge.
Neighbour: What’s wrong?
Me: I can’t exercise, I’m sick.
Neighbour: Oh, I thought you’d broken your ankle or something.
Me: I wish.

Me: I’m not at the office much these days because I have chronic fatigue.
Man: Are you a vegetarian? Because I was a vegetarian for ten years and then I got chronic fatigue because I wasn’t getting the right balance of amino acids.
Me: Ah, no, my diet’s fine.
Man: So you’re not getting enough sleep?

I feel compelled to tell people I have a chronic illness because I need to justify to myself my dereliction of life. But it leaves me open to conversations like that. I’ve always worn my heart on my sleeve, but now it seems like everything else is pinned there as well. My pancreas, my liver, my endocrine system. Everything. 

 

But have you tried eating mummified flesh?

One of the recovery strategies the doctors gave me for chronic fatigue was tracking my step count as a proxy for the amount of physical activity I can do in a day. “It’s not exact,” one of the doctors said. “You could spend a day on a stool painting a wall, and obviously your steps wouldn’t reflect that.”

I haven’t painted any walls since I got sick. But I have tracked my steps every day since January 2018.
Chronic fatigue syndrome 2019 step count recovery strategy

The first half of the chart shows a clear upward trend. The second half gets messier. There’s a lot more up and down. Some days are great. I broke a new post-illness step count record in September. I just never know when I wake up if it will be a good day or a flu-y, brain-fogged struggle.

I have high and low energy (the ‘boom and bust’ characteristic of chronic fatigue) on a day-to-day level, but I also now seem to have it on a macro level. I’ll have six terrible weeks, and then four pretty good weeks. So depending on when you talk to me, I might say that I’m feeling despondent about how ill I still am, or excited about how much better I’m getting. Both are accurate.

What I am feeling genuinely great about is that I’m alive and ill in Australia in the 2000s, and not in, say, Europe in the 1400s, when the cure-all craze was mummified human flesh.

Medieval Europeans believed that ground up human mummy could be consumed or even applied directly to wounds to cure everything from nausea to epilepsy. It grew so popular that Egypt began to run short of mummies, and entrepreneurs in Europe started taking bodies from cemeteries to create their own mumia.

This completely ineffectual health fad went on for hundreds of years, and I can just imagine, if I’d lived in Europe back then, how many well-intentioned people would have gotten in touch with me to ask if I’d tried treating my chronic fatigue with mumia.

And the thing is, I definitely would have tried it.

 

Thefting by finding

Sedaris Diaries vol 1When I was 14, my aunt gave me a purple journal with Garfield on the cover (the cat, not the president). This indicates how cool I was at 14. Having barely any friends gave me heaps of time to write in my journal. I’ve kept up that habit for more than two decades.

I sometimes wonder what will happen to the diaries when I die. I doubt someone will go back and read them. They’re incredibly boring. When I mentioned this online, author Annabel Smith described her own diaries as ‘right on the boring/excruciating boundary’. I thought that was the perfect description.

I’m a huge fan of American essayist David Sedaris, whose work is hilarious and illuminating. When he came out with Theft by Finding: Diaries Volume One in 2017, however, I thought ‘this feels like too much. Do I really need to read this guy’s diary excerpts?’

I was pretty certain the answer was no. But then I got sick for years and Theft by Finding was released as an audiobook, and I was desperate for entertainment I could consume while lying down with my eyes closed. I was surprised to discover I loved Theft by Finding. It’s become one of my all-time favourite books. Sedaris weaves in his own story, and it’s actually quite interesting (from working odd jobs straight out of high school in his home state of Carolina to art school in Chicago to huge success as an author in New York). But what really makes his diaries is his observations about the world around him. It seemed like a technique worth developing in my own diaries.

To be clear, I think Sedaris’ diary excerpts are brilliant and fascinating and reflect the sociopolitical issues of their times. Whereas mine are mostly things I found entertaining. I started posting a few excerpts. My journals still feature lots of boring/excruciating bits, but thanks to Sedaris, I think there’s a few good bits too.

*

May 14, 2018
Recently I was complaining about houses and dogs having people names like Gerald. Today, a friend mentioned that she’d met someone at work whose name is B’rit. ‘With the apostrophe,’ she said. That’s a bit strange, I replied. ‘My sister went to high school with a girl named Haloumi Sparkles,’ she added. I didn’t get a chance to ask if Sparkles was her middle name or her surname, because someone else cut in.
‘A girl from my high school named her kids Tiger and Sabre.’
A third woman among us topped even that. ‘My dad is a pediatrician and he has a set of twins as patients,’ she said. ‘One is called Bladeinjail, because his dad is in jail for stabbing someone. The other is called Captain Dangles.’

May 29, 2018
There’s a huge billboard advertising a space for lease, near my office. It features an image of a cat with a third eye photoshopped into the centre of its forehead. The cat is giant, the size of a car, and its three eyes stare down at you, as if trying to hypnotise you into leasing the building.  I have been looking for a large commercial and/or office space…

June 1, 2018
Saw a man wearing one red sock and one blue sock. Society is really falling to pieces, with our reliance on fossil fuels, the election of Trump, and now this.

 

Ten (more) best podcasts

Last year I recommended ten podcasts I love. This year I’m still spending a ludicrous amount of time lying down, which means I’m still listening to a lot of podcasts. Chronic fatigue has basically turned me into a podcast curation service.

Here’s ten more I’m sure you’ll enjoy.

  1. The Shrink Next Door
    This six-episode series tells the bizarre true story of a psychiatrist who came to control every aspect of one of his patient’s lives, including moving his family into the patient’s house and making himself president of the patient’s company. It sounds implausible, but the evidence exists to prove every step of the manipulation, as this series shows.
  2. Reply All
    Reply All is a podcast about the internet. This description made me initially sceptical about it, but Reply All isn’t techie or niche. It explores the human experience of using the internet from all kinds of angles. Like in episode 130, when the hosts try to help a listener whose Snapchat account has been hacked, and end up stumbling onto a ring of cybercriminals in Europe.
  3. The Dream
    Told over eleven well scripted episodes featuring a variety of interviews, The Dream explores multi-level marketing, why so many people get involved with it, and how it’s nothing more than legalised pyramid scheming. At the start of season one, the host signs up to a multi-level marketing company, and everything unravels for her as she tries to make back the money she spent.
  4. Missing Richard Simmons
    This six-part series from Dan Taberski explores the abrupt and mysterious withdrawal of Richard Simmons from public – and seemingly private – life. I didn’t know or care much about Simmons before listening to the podcast, but Taberski is an excellent storyteller, and has a good sense of humour as well. He draws listeners through the series by creating mystery and empathy around Simmons.
    Taberski followed up this series with two more: Surviving Y2K, which weaves together various stories that centred on New Year’s Eve 1999, and Running from Cops, which examines the cultural impacts of the reality series Cops. All three series are absorbing and distinct.
  5. Mobituaries
    A comedian named Mo Rocca is obsessed with obituaries. This doesn’t sound like a compelling concept, but Mo excels at weaving history and facts into fascinating stories. Plus, his obits are inventive. In one episode he tells the story of a JFK impersonator whose career ended with the real president’s assassination. Another looks at the demise of the Neanderthals (and the surprising fact that many people today have some Neanderthal DNA). My favourite is the story of a pair of conjoined twins from Thailand, the original “Siamese” twins, their brush with the American dream, and how they negotiated daily life between the two women they married.
  6. Root of Evil
    I listen and read to a lot of crime stories, and this was the most fascinating true crime case I’ve ever encountered, anywhere. The podcast weaves together two interconnected narratives: a cold case investigation into the Black Dahlia murder, which took place in Los Angeles, 1947; and the story of the intergenerational trauma experienced by the Hodel family. The murder storyline and its investigation are more interesting, although the family storyline adds depth to the series. The Black Dahlia murder is bizarre, but the theory of the crime put forward here was one of the most startling, insane things I’ve ever heard.
  7. Bear Brook
    A short but impressively told documentary crime series that begins in the New Hampshire woods, in 1985, with the discovery of two barrels containing four bodies. Investigations are still revealing new information about this case 34 years later. I especially love true crime podcasts, and Bear Brook is the most impressive of all the ones I’ve listened to, both because of the fascinating way the investigation unfolds, and the superior storytelling skills of its host, Jason Moon.
  8. Direct Appeal
    Like Serial, Direct Appeal explores a single murder trial to consider the possibility of a wrongful conviction. “For the last 13 years, Melanie McGuire has been serving a life sentence for the murder and dismemberment of her husband, whose body was found in three suitcases in the Chesapeake Bay.” Criminologists Meghan Sacks and Amy Shlosberg examine the evidence, including their own interviews with Melanie. It took me a bit to get used to the rapid-fire way the hosts talk, but I’ve come to love the show as much for their charismatic interaction as for the gritty, baffling details of the case.
  9. Crime Junkie
    Every week, Crime Junkee summarises a major crime story, including cold cases, serial killers, murders and missing persons. The host delivers the story in a chatty style, while her (largely superfluous) producer provides personal reactions. They often cover less infamous cases, like American serial killer Herb Baumeister, who kept a bunch of mannequins posed around his indoor pool so he could pretend he was having pool parties, and also killed as many as 21 men.
  10. Invisibilia
    This podcast uses documentary-style interviews and storytelling to examine the unseen forces that shape ideas, beliefs and assumptions. Season 4 featured a two-part series on how the human brain processes emotions that was especially interesting.

Bonus: My favourite podcast is still Everything is Alive. Each episode features a scripted interview with an inanimate object, as well as a phone call to an actual person or organisation that is always peculiar and fascinating. All the episodes are enjoyable (and one features Sydney comedian Jennifer Wong playing a copy of The Canberra Times from 24 October 1988). But my absolute favourite episode is Connor, a portrait of US President William Taft. It’s both humorous and incisive, and it features the best monologue on bread you will ever hear.

PS. I’m speaking about my own crime book, My Name Is Revenge, in Brisbane on Wednesday 24 July. If you’re in the area, join us!