Why I Left Twitter, or, the Last Day of 2019

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?

Writing novels.

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.

As it happens, I did publish this year. A bleak short story called “Elegy” for Emily X R Pan and Nova Ren Suma‘s YA anthology, Foreshadow. It’s an incredible anthology with many fabulous stories.

I will have a new story published next year. It’s called “When I was White” and will be in Adi Alsaid‘s YA anthology on immigration, Come On In published by Inkyard Press in October 2020.10

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.

  1. 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. []

  2. It was also a way of mourning her death. She is a foundational writer for me. []
  3. Stories Le Guin would have considered woeful, but no matter. []
  4. Hilariously. I’ve always hated being told what to do. []
  5. Do not get me started on the US healthcare system. []
  6. 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. []
  7. My seven-year-old niece’s concern breaks my heart. []
  8. 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. []
  9. I found the people who think cricket is as funny as I do. []
  10. 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! []
  11. Fortunately, I’m working on other novels. So who knows? Maybe in 2030 there’ll be four from me at once. []
  12. Scott and my family have been incredible. I love them so much. []

24 comments

  1. Lauren McLaughlin on #

    Sending you love. Lots and lots of love. X

    • Justine on #

      Thank you! Right back atcha! xox

  2. Lisa McMann on #

    Love you and miss you, Justine! Thanks for sharing this.

    • Justine on #

      And I you. Follow me on Insta! xox

  3. Jessie Devine on #

    Sending lots of love. 💗

    • Justine on #

      Thank you! xoxoxox

  4. Claire on #

    So glad you’re able to return to writing! i couldn’t write for four years after getting CFS and had to eventually learn a whole new way of writing (from outline, no longer pantsing.) I wish you all the spoons, and short of that, all the patience and acceptance and genuine friendship.

    • Justine on #

      Ugh. That’s awful. Almost a year of it was bad enough.

      Yeah, I’m still in the struggling stage of trying to figure out how this writing thing works now. Which involves attempting some planning. *shudder*

      I suspect this illness has changed many of the connections in my brain. Does it feel like that to you?

      And yes spoons! You’re so right about patience and acceptance and friendship without which I’m not sure where I’d be. Right back atcha of course. xox

      • Claire on #

        Not sure what you’re dealing with. For me, CFS brain feels more like being slowed down and distracted, not like being rewired. I’m me, but less. Which is just as awful as it sounds, but maybe a different kind of awful from being rewired.

        • Justine on #

          When I’m out of spoons, it definitely feels like that, which, yes, foul. But when I’m as full of beans as I get, it feels . . . different. Haven’t figured out how to describe it.

          • Claire on #

            I hope this can turn into a plus for you. Not feeling yourself is awful, but maybe change can be a good thing. I’m writing in a completely different way now–much more trashy and genre-y, which is much more fun. I’m going to try to write some more literary stuff again soon and see how it goes. I’d love to be able to do both.

            • Justine on #

              I’ve always written genre. Lord, I hope I don’t turn all literary! Eek!

              Seriously, though a long-term illness changes us. I’m not who I was in a more profound way than I’ve ever experienced before. Some of the change is good. I’m oddly more chill. (Well, except for when one of the drugs they’ve put me on turns me into a manic, anxiety-attack prone mess.) I’m also way slower at everything. I just find that slowness the most difficult when it comes to writing. Does that make sense?

              • Claire on #

                Hell yes it makes sense! That’s my deal. As my treatment goes on and I (so slowly) improve, I’m having more and more ideas and I want to write them. But I can only do so much per day and my pace does not speed up. I used to be able to choose: fast or good. Now I can’t choose; I just get what I get, and my progress on my writing projects is soooo slooooooww. And that’s when I’m moving. Then I’ll have a flare up and everything will stop. I’m hanging five chapters from the end of a first draft and I wanted to get them done before Dec. ended; and then the first week of Jan. Now I’m thinking I’ll be lucky if I get it done before the end of Jan. SLOW. And for me, the slowness is not the slowness of greater observation and attention to detail. If it is for you, maybe that can be a good thing.

                I also thought I was more chill, more patient, but then I discovered that it was because I didn’t have the spoons for negative emotions and drama. When I started getting some spoons back, I started having a reckoning with a lot of negative shit I’d put off dealing with for years. Argh!

  5. Mike Jung on #

    Much love and respect to you, Justine. I’m very scattershot with IG, but I’ll see you around there sometimes.

    • Justine on #

      Thank you and to you. I do miss teasing you, Mr Jung. And shall continue to do so on Insta. xox

  6. Rebecca Kim Wells on #

    I have enormous respect for you and your body of work. Best wishes for 2020 from a fellow spoonie.

    • Justine on #

      Thank you and same to you.

      There are so many spoonies! I swear we outnumber the able-bodied.

  7. A.C.E. Bauer on #

    I’m so sorry, Justine. I, too, have been fighting an illness that has robbed me of the ability to write fiction, going on three years. It’s heartening to hear that you are finding a way to get back into it, and gives me hope that I may someday, too. Take care.

    • Justine on #

      I’m so sorry you’re unable to write. It is the most awful thing. Thank you. xoxox

  8. Wendy Waring on #

    It is so hard to adjust to the new life, post diagnosis. I’m glad you’re no longer wondering what’s wrong. (It took K. years to finally get diagnosed.) So please do take whatever time you need. I wish for you all the spoons you want today, and a good day tomorrow.
    Wendy

    • Justine on #

      Thanks so much. I wish the same for you and K. xox

  9. Tara Nipe on #

    All chronic diseases suck, in their own special way; one near-universal commonality is the psychological impact of whatever combination they bring of pain, nausea, dizziness, fatigue, insomnia, hypersomnolence, and sheer bloody physical and mental effort of pretty much every damn thing. Decades as a nurse and I didn’t (probably couldn’t) understand that until I was incapacitated by back pain for 15 months, with a daily legacy that persists. It’s not the same, but I also couldn’t write, abandoning my PhD with all the research, analysis, and half the words (40,000) completed.

    I’m so very sorry that you’ve joined the legion of the large, and largely invisible, spoon brigade – not just because of symptoms, side-effects, sequela, and ongoing contact with many of my colleagues, but also because of the unceasing flow of helpful advice.

    None of that here, just hopes that your accomodation of changes and adjustment to your new normal brings you the space and capacity for the things that bring you satisfaction and joy.

    Thank you for your words, online and on paper, that have brought me so much joy,

    • Justine on #

      Thank you for your very kind words. Much appreciated.

      And, yes, the endless helpful advice . . . It is to scream.

  10. Steve Buchheit on #

    ❤️

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