When I first met up with Monica Michelle via Zoom and asked how she was, she replied “A relative shape of a human.”
I recognised the feeling.
Monica hosts Explicitly Sick, one of the podcasts from the Invisible Not Broken network. She lives with Ehlers Danlos Type 3, fibromyalgia and POTS, and after having to give up a career in photography, she now interviews writers, creators and artists with chronic illness.
Ehlers Danlos syndrome is one of many conditions I hadn’t heard of before I struck by chronic illness myself and discovered a community of millions of people living with a wide range of conditions that prevent them from fully participating in their own lives. Ehlers Danlos is actually a group of related connective tissue disorders that result in pain and fatigue, among a complex variety of other issues.
She started her podcast in part to “help others be kinder and more gentle with each other.”
Even while she’s coping with physical pain, Monica is a delight to speak to. In this conversation, we discuss: – chronic fatigue syndrome and my experience with insidious onset – the impact of illness on personal relationships – marriage counselling – the challenge of asking for help – writing about illness – Fiona Wright’s The World Was Whole – what progress means when you’re sick – the secret to fighting project inertia in creative projects
If 2020 taught us anything, it’s that there’s no point making plans. I planned all kinds of things last year, including that I would be in Canada over this holiday season to finally visit my family after four years of CFS making the journey impossible.
Instead I’ve spent three damp and soggy holiday weeks in New South Wales, mostly squelching around my neighbourhood, much like I did all year.
I planned to increase my micro swims to tiny swims, and to jump in the pool without hesitation. I was doing great at this in January, but then in February my CFS got much worse, and I wasn’t able to swim. I kept trying to get back to it, but then covid closed the pools, and I got sicker.
Another resolution was to read more, which I’d assumed I’d be able to do as my health continued to improve. But it really didn’t. My CFS recovery tanked in February and March, and again in August and September, and I felt like I spent the rest of the year trying to recover from those months, just to get to where I’d been in January.
I also wanted to develop my listening skills and ask better questions, but between CFS shutting me down and covid shutting everything else down, I gave up on this. If anything, I’m less inclined to ask any questions when I go out these days.
There was one resolution I managed, however: to have a first draft of my new novel by 31 December. I’m happy to tell you I’m already into draft 2, and I’m very excited about it.
Also in 2020 I completed the Lost Hours Project. Every day, I recorded how much time I lost to illness, ie how much time I spent in bed during the day rather than up living my life. I was very optimistic at the start of the year, so I thought it would be an encouraging exercise. I thought the numbers would gradually improve.
I lost 1024 hours last year. If you assume 16-hour waking days, that’s 64 days – more than two months.
But I also realised that this project wasn’t working. I’d wanted to quantify the experience of illness, to find a metric to compare days and months. This isn’t it. In September I lost 89 hours to chronic fatigue and in October I lost 85. But those two months were wildly different experiences. In September (and August) I felt like I was drowning almost every waking minute. In October I was quite functional when I wasn’t in bed, and I was able to do cognitive work without fighting through an ocean of misery.
It turns out it’s not so much the lost hours that matter (though of course they do), but the quality of the hours that are not lost. And that’s much harder to quantify.
I know what you’re thinking – yeah, but look at December. You must be feeling a lot better! Not quite. I was just on holidays. My office closed for the holidays on 16 December, and when I can spend 15 hours a week relaxing instead of doing intense cognitive work, my symptoms become much milder.
So I decided not to continue the Lost Hours Project in 2021. I’m not convinced the data is very useful, and it’s a bit depressing.
Some good news: today I jumped in the pool without hesitation and did a micro swim. If I don’t end up collapsing for several hours in the next two days, I might even do that again.
Still, I refuse to make plans or goals this January. I’m sick of it. I’m going to write a new draft of this book as fast or slow as suits me on any given day.
Actually I do have one resolution I’m very keen on, and that is to use the word absquatulate as much as possible.
Say that out loud and tell me it isn’t the most fun you’ve ever had.
It means to leave abruptly, which is something that can be worked into most conversations, even if I have to do more than my share of absquatulating to ensure I can bring it up.
James and Ashley are staying at home. Partly because there’s a pandemic, partly because they’re writers, and partly because of their health. Through discussions and interviews with other writers, they’ll try to build fellowship and entertain, or at the very least, explore how staying at home has its benefits.James and Ashley Stay at Home 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.
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 of short and novel-length fiction. He’s been recognised in competitions including the International InkTears Flash Fiction Contest, the Newcastle Short Story Award and the Grieve Writing Competition, and featured in publications such as Baby Teeth Journal and Brave Voices Magazine. In 2017 he was shortlisted in the Kingdom of Ironfest prize for his novel Denizen. He works as a nurse in regional NSW. Find him on Twitter or visit his website.
James is a member of my Writing NSW writers’ group, pictured here at the 2019 launch of My Name Is Revenge: Jonathon Shannon, James, me, Simon Veksner, Amanda Ortlepp and Andrea Tomaz.Episode 2 is a special episode, which features me reading the first chapter of my new memoir, How to Be Australian.
In episode 3, we launch into our interviews with Australian authors starting with Lee Kofman, author of Imperfect.
In episode 4, James grills me about writing my new memoir, How to Be Australian. (It turns out the secret to getting asked all the questions you really want to answer is to be a guest on your own podcast.)
Episode 5 features debut author Anna Downes discussing her international hit The Safe Place, as well as her experiences with postpartum anxiety.
In episode 6, James and I share the stories of how we came to be writers and share some of our favourite writing tips.
Episode 7 features British-Japanese author Katherine Tamiko Arguile discussing her debut novel The Things She Owned and the health crises that drove her to pursue a writing career.
In episode 8, we interview author Kate Leaver about her new book, Good Dog, and learn about just how excellent dogs are for our wellbeing.
Episode 9 features art therapist Karin Foxwell discussing the profoundly therapeutic power of art, as she’s observed in her work with military and emergency services personnel who’ve sustained PTSD in the course of their service
Episode 10 gets personal: James and I explain our health conditions, discuss how these affect day to day life, and explore how illness has impacted our senses of self.
In episode 11, we discuss anxiety with comedian Anthony Jeannot.
Episode 12 features bestselling author Petronella McGovern discussing her new novel, The Good Teacher, and the allures and dangers of fringe healthcare.
In episode 13, we chat with the legend herself, author Kate Mildenhall, about the craft of novel writing, the challenges of penning a second book, and the creative anxieties that plague writers.
Episode 14 features Elizabeth Tan, author of Smart Ovens for Lonely People, discussing the public health crisis of loneliness, the personal experiences that inspired some of these stories, and an unusual but highly effective writing prompt.
In episode 15, James and Ashley share their motivations for writing, writing tips, and more.
Episode 16 features Ada Palmer, historian, composer and author, and how she’s managed to achieve so much while managing a number of invisible illnesses.
Episode 17, the last episode of 2020, highlights some of the best writing tips from the year, and is a great resource for any writer.
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.
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.
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.
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. For Reals 2020 Resolutions & Goals
Have a first draft of the new novel by December 31.
I’m 40,000 words into a zero draft.
Gradually increase my micro swims to tiny swims. #chronicillnessrecovery
Jump in the pool without hesitation.
This will save me upwards of 15 minutes each time I swim. (And I’m already nailing this.)
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.
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.
24 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.
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.
I 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.
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.
When I was seven, my school published a story I’d written in a collection called Young Saskatchewan Writers. (My family lived in Moose Jaw, so I was Saskatchewanian.) It was a one-paragraph story about a wizard who turned some school kids into frogs.
Seeing my name in that book made me think I actually was a writer, or at least would be some day. I started a novel when I was fourteen, and another when I was eighteen. The first was speculative fiction about killer bees from Mars; the second was apocalyptic magical realism. (All I can say is, thank goodness self-publishing was not so widely accessible back then.)
There were a few years in my twenties when I didn’t write anything but journals, mostly because I was living in Peru and Mexico, and spending my time learning Spanish.
I returned to writing seriously in 2010. I applied for an arts grant, and somehow got it. Around that time, I read a book in which the author mentioned that it took 10 years for her project to go from idea to publication. I found this ridiculous. There was no way my book would take that long.
Almost exactly ten years later, my first book came out. I was 35. Which is to say, this was a major life goal of mine that I worked very hard on for many years, and achieving it felt really good. And lots of great things have happened since my book came out.
Here I am at Sydney Writers’ Festival with essayists Fiona Wright and Luke Carman, whose new collections explore the impacts of chronic illness. It was a bit intimidating to get up on stage with such skilled, established authors. But it went well, I think. After the talk, all three of us went to the signing tables. I’d joked about how, because I was the panel moderator, no one would come to have my book signed – no one ever goes to see the moderator. And I was right! I sat there all alone while people lined up with Fiona and Luke’s books. It felt like a rite of passage.
Since my book has come out, I also had the pleasure of speaking to Claudine Tinellis, who hosts the podcast Talking Aussie Books about writing Revenge and tips for writers.
I made my first book club appearance, with this incredible group of Armenian women. This was delightful, not only because they had all read the book and we had a robust, three-hour discussion about Armenian identity, but also because it was like being with my aunts and cousins. And I was invited to appear at the NSW Dickens Society annual conference with the wonderful Walter Mason. This time, I signed some books!
And I have more events coming up, in Sydney, Brisbane and Melbourne.
Chronic fatigue has made all this challenging. My events have gone well, but I usually go straight to bed after, sometimes feeling like my head’s being crushed in a vice. But I’m still grateful I get to do it. I know people with chronic illnesses who aren’t well enough to even attend events, let alone speak at them. And I know lots of writers who have been working on their manuscripts for many years, hoping to see them published.