Note: I’m not on Twitter. If you wish to discuss any of these blog posts with me, leave a comment on my blog. I will respond.
This has been a horrible year for me.1 Or, rather, it’s been a horrible two years–more than two years.
In June 2017, I woke up feeling weird. It was the beginnings of this chronic, incurable, non-fatal illness that now holds huge sway over my life.
Over the next few months, more symptoms manifested, the worst of which was losing my executive function. I couldn’t make decisions. Do you know what activity requires lots of decisions?
I couldn’t do my job.
I’ve never had writer’s block. Ever.
Not being able to write, not being able to decide what to wear, or whether to leave the house, or pretty much anything, was a nightmare. I became depressed.
When I became ill, I’d written two thirds of a novel from the pov of a psychopath. It was already doing my head in writing the thoughts of a character who considered other humans to be pawns, not people.
After I got sick it was worse.
I’d be stuck reading the one scene, passage or sentence over and over, hating what I was reading, trying to find a way forward, failing, switching to a different scene, passage, sentence, clause, failing again, feeling worse and worse.
Every day I’d doggedly try to do my job. The words I’d already written, led me to choices I was no longer capable of making. Bleak choices. I’d stare, read and reread, and type nothing.
My depression deepened.
I broke out of it when we learned how to manage my illness. As my executive function slowly returned, I tentatively wrote again. Instead of plunging back into the novel, I went back to basics.
I turned to Ursula K. Le Guin’s Steering the Craft. Le Guin is stern. I needed her strong, unrelenting, unforgiving voice to guide me.2 I did the writing exercises she laid out exactly as she told me to.
Every day I sat, read a chapter, tried the exercise. It was brutal. But gradually my fluency returned. The exercises started turned into stories.3
My agent, Jill Grinberg, who’s been amazingly supportive throughout, read the stories, said encouraging things, suggested one of them would work as a novel. So I did what she said. Being told what to do helped a lot.4
That exercise turned into a novel. Not a very good one. But definitely a novel-shaped text, with characters and exposition, a beginning, middle and end.
I’m currently rewriting that mess. It’s slow going–slower than I’ve ever written–but I’m writing.
I’ve learnt (yet again) that I’m happiest when I write. If I’m not writing, I’m not wholly me. I’ve learnt to work around my illness.
I’m not going to name it or talk about the many other symptoms. I don’t want to talk about it.
That’s not true.
Since June 2017, there have been many times when it’s all I can talk about. I’ve told random people on trams, trains and planes about it. Blurted out my symptoms to startled wait staff, acquaintances and strangers at weddings, parties, conferences and fundraisers.
I discovered that many of my friends and acquaintances have chronic diseases. Is anyone truly able bodied?
My friend with Hashimoto’s doesn’t really think about it that much–except when the price of meds goes up. God Bless the USA.5 Another friend doesn’t think about her illness except when she winds up in hospital.
I had no idea.
Why didn’t they tell me? Why have I stopped telling people?
So many reasons! Because:
Lots of able-bodied people don’t get it, we’re sick of talking about it, we don’t want your pity or revulsion, we’re sick of well-meaning people recommending treatments we’ve already tried or are pure quackery. No, being immunised did not cause this.6
Also we’re past the crisis stage, when we’re desperately trying to figure out what’s going on, and it’s all we think about.
We’re in the management phase. We know what meds to take, what diet/exercise/therapies work.
My family and friends know what’s going on. I love that they check in with me and support me and mostly treat me the way they always did. That’s enough.7
I no longer enjoy talking about my chronic illness.8 I talk about it far less. Though I have one friend with similar symptoms. We check in with each other regularly. She gets it and never says, “Hope you get well soon! I’m glad you’re getting better!”
What part of “chronic” and “incurable” do people not understand!?
I know, I know, our language around illness is rubbish. Folks mean well. Before I joined the ranks of the spoonies I said ridiculous stuff like that too.
I’m so sorry.
More than two years into this chronic, incurable, though not fatal, illness, I’m still learning how to cope with so few spoons. I still think like an able-bodied person, but I’m not. I’m a spoonie.
That’s why I left Twitter.
Things that were easy are now hard. Much of my resilience is gone.
I love Twitter. The conversations I’ve had on there with people all over the world have taught me so much and made me laugh and changed me.9
But after my illness, I started to hate Twitter. I lost my ability to brush off unjust criticism, to think through just criticism, or to tell the difference between the two. Even benign comments in my mentions upset me.
Twitter was wiping out all my spoons. I couldn’t tweet and write. Some days I couldn’t tweet and get out of bed.
So in November I walked away. I don’t know when I’ll return or if I’ll return. I’ve been doing better without it, though I miss the conversations around cricket and basketball and fashion and books and politics and TV. I miss my Twitter community.
I’ve been writing more, and getting out more, and learning about the new vintage clothes world on Instagram via my private account there.
Who knows? Maybe as I become better adjusted to so few spoons, I’ll return to Twitter. Or maybe I’ll start blogging regularly-ish in 2020?
I used to blog every day.
I used to write a recap of my year every 31 December and point forward to what I was publishing in the coming year.
I couldn’t do that in 2018. I published nothing and sold nothing. I couldn’t decide whether to get out of bed or not. I certainly couldn’t decide what to blog.
I wrote this year and I’ll write in 2020.
I have no idea when there’ll be a new novel from me. But given that I’m months from finishing this rewrite, it would be published in 2024 at the earliest, and there’s no guarantee it will find a publisher.11
All of which is huge progress from where I was a year ago, but It’s terrible compared to where I was ten years ago.
Things don’t always get better, but if we’re lucky, and have support from those who love us,12 we have a shot at learning to manage.
- And the world. I write this in Sydney, on a day when the entire South coast of NSW is on fire. Lives and homes and national parks and agriculture are going up in flames. Smoke from the bushfires is so thick here in the city there’s a Poor Air Quality Forecast from the NSW government and we’re being advised to stay indoors. It’s been like that off and on for weeks.
Currently our AQI of 124 is worse than Beijing’s. All we talk about here is the drought, air masks, purifiers, and what we can personally do to ameliorate climate change and force our governments to do likewise. There are worse fires in the Amazon. There are environmental disasters everywhere. [↩]
- It was also a way of mourning her death. She is a foundational writer for me. [↩]
- Stories Le Guin would have considered woeful, but no matter. [↩]
- Hilariously. I’ve always hated being told what to do. [↩]
- Do not get me started on the US healthcare system. [↩]
- I’m not interested in answering questions or hearing miracle cures unless they’re thoroughly peer reviewed and even then odds are I’ve already heard about it. Yes, I’ve tried acupuncture. I consider Chinese medicine to be peer reviewed and as (in)fallible as Western medicine. For me acupuncture works great at bringing swelling down and various other things. It hasn’t worked on this illness. But then neither has western medicine. Both have helped manage the symptoms. [↩]
- My seven-year-old niece’s concern breaks my heart. [↩]
- Yes, in the beginning, when we had no idea what was going on, and my symptoms were weird, and weren’t disrupting my work or play, it was kind of fun to talk about, and shock folks with photos of the weirdness. [↩]
- I found the people who think cricket is as funny as I do. [↩]
- All you editors, who over the years have asked me for short stories, and I said I don’t write them? Turns out I write short stories now. Hit me up! [↩]
- Fortunately, I’m working on other novels. So who knows? Maybe in 2030 there’ll be four from me at once. [↩]
- Scott and my family have been incredible. I love them so much. [↩]