Podcast: James and Ashley Stay at Home

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.

Screen Shot 2020-06-07 at 7.15.36 pm

James 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 three 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. It turns out I can’t embed episodes, not without paying several hundred dollars a year in WordPress fees.

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.

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

 

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

2020 resolutions I might actually stick to

Last year I shared a bunch of resolutions I intended to utterly fail at – and that felt great. Failure is a part of trying, and dealing with chronic fatigue makes me that much more likely to fail, since my daily health is so unpredictable. Acknowledging that I’d probably fail at most goals I set in 2019 was actually very encouraging.

Then I skulked off and secretly set some actual goals anyway. And those went pretty well, especially as the year wore on. Every few months, I regain a little more of my cognitive and physical capacity. Some people think that chronic fatigue is permanent, but when I was diagnosed, the doctors told me that most people recover. ‘On average it takes 3 to 5 years,’ they said. ‘Though it can take 10.’

I’m in my fourth year.

At the start of 2020, I made a list of goals for the year. I could have shared them on Jan 1, but I decided to test drive them before fully committing. Four weeks into the new decade, I think these are the keepers. David Sedaris book signing
For Reals 2020 Resolutions & Goals

  1. Have a first draft of the new novel by December 31.
    I’m 40,000 words into a zero draft.
  2. Gradually increase my micro swims to tiny swims. #chronicillnessrecovery
  3. Jump in the pool without hesitation. 
    This will save me upwards of 15 minutes each time I swim. (And I’m already nailing this.)
  4. Read more books.
    Because my daily cognitive energy still has a hard limit, I’ve been prioritising writing over reading. This year I want to increase my reading time, and add to my list of great reads.
  5. Develop my active listening skills. 
    Which means focussing on what others are really saying to me in conversations, rather than just waiting for them to finish talking so I can share my thoughts. Sheila Heen discusses this in-depth on the Knowledge Project.
  6. Ask better questions.

Author David Sedaris recommends this in his masterclass. (I took the course, and then had the opportunity to meet him when he came to Sydney in January.) Candice Fox also mentions it in her Better Reading interview, describing herself as nosy. (She also describes how she came to interview a serial killer, so I feel like she’s someone with useful advice.)

Sedaris decided he’s no longer engaging in small talk, and instead starts conversations with questions like ‘Have you ever eaten horse?’ just to see where things go. I’m not willing (ie. not brave enough) to give up small talk entirely, and the introverted part of me would prefer to go through life never having to talk to strangers at all.

But then I realised it doesn’t have to be an all-or-nothing resolution. I decided to try asking two or three ‘better questions’ each week.

I asked the fruit store cashier about the strangest fruit they stock, and she got all excited telling me about lemonades,  a type of lemon that taste exactly like lemonade. (I’m going to follow this up in fall, when they’re in season.)

I asked a hairdresser about other jobs she’s worked, and she told me far more than I ever wanted to know about gum disease, thanks to her previous experience in dental office reception.

I asked a Pet-O cashier about people with strange pets, and she ended up telling me all about her bearded dragon, which she hand-feeds.

I’m excited to see what I’ll discover by asking questions this year, and also how the rest of my resolutions progress.

Wishing you all best for your 2020 goals!
xx

 

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.

 

Like floating in space, but wet

My doctors advised me to manage my chronic fatigue recovery by taking frequent rests throughout the day. This is fine if I’m home, where there’s no people buzzing around, where I can put on my eye mask and if necessary, noise-cancelling headphones. When I’m not home, it’s harder to actually rest. And sometimes it’s not possible to be home every three hours.

One thing I used to find wonderfully restful was getting a massage. Technically I can still get a massage, but it will leave me as exhausted as if I went for a run. (Obvious conclusion: having a massage is a form of exercise.)

So I’ve been looking for restful alternatives. Which is how I discovered the sleep pod.
Sleep pod in a hotel business loungeI found this particular sleep pod at a Brisbane hotel. The hotel was so futuristic, my room didn’t have light switches (light switches are so 20th century). Instead it had a smartphone on which you could set ‘moods’ for your room. Except that when I arrived, the smartphone battery was dead, so the mood of my room was ‘put your makeup on in the dark’.

The sleep pod was in the business lounge. Sure, I could have rested in my actual hotel room, but the pod promised executive-quality power napping. This turns out to mean that you get in, the pod reclines and vibrates mildly, and some blue lights inside the pod bit imply that your nap is futuristic.

I give the sleep pod a D+.

Next I tried a float tank, also called a sensory deprivation tank. Float tanks are filled with salt water, so you can float like you’re at the Dead Sea, except without all the slick mud and tourists taking photos. So maybe it’s more like floating in space, but wet.
A float tank in a float tank centre
You spend an hour in the tank, floating total darkness and blissful quiet, trying not to get salt water in your eyes.

I give the float tank a B+.

Is it more relaxing than napping in a sunbeam on my own couch with an eye mask and noise-cancelling headphones? No. Sunbeam naps at home are a solid A+.

If I’ve become an expert in anything in the past few years, it’s napping, and this is my expert recommendation. Nap at home, in your pyjamas, with the whole world blocked out by eye masks and headphones and layers of blankets, even if it means you’ll spend far more time there than you ever expected or wanted to.