The Importance of Masks

I’ve embraced our new mask-wearing present. The evidence is now overwhelming that they slow the spread of disease AND protect the wearer.

I’m immunocompromised. I don’t want COVID-19. I know people who’ve been left with an array of side effects from supposedly mild cases. It is a nasty virus we don’t know nearly enough about. No, thank you.

Since I’m following the law, medical evidence and common sense, and wearing a mask, I figured I’d have fun with it. I’m a fashion obsessive–just check out my alter ego Instagram, Dr Justine Fancy Pants–I had to have stylish masks and what better way to support local designers? Most of us can afford the cost of a mask even if we can’t afford a dress.

I’ve bought masks from local NYC designers/stores Emme, East Village Hats, Junny, Salvage Cloth and Indigo Style Vintage. Check out the masks by local designers in your region. Support them if you can. It makes a world of difference.

My doctor recommends turning your masks inside out after use and putting it in direct sunlight for an hour. If that’s not possible hand wash with gentle detergent or soap. Always dry completely before wearing again. It’s best to have at least two masks.

PS: I haven’t been blogging because I missed the community that used to be here. When this was a regular blog there was a wonderful conversation in response to almost every post. I’m finding blogging here to silence soul sucking.

I miss the community of the old days but I accept those days are gone. The conversations now unfold on social media.

I have found an engaged community on Instagram ready and willing to discuss the intersections of fashion and politics during this pandemic and there are no trolls. I’m loving it. So I post my mini essays there. I will continue to post longer essays here and will soon be updating this site with my fashion research.

I don’t foresee returning to Twitter anytime soon. It was too depressing. I miss those of you I no longer interact with, but my mental health is so much better since I left. So . . .

Photos of me were taken by Scott Westerfeld.

On Not Writing Fiction During The Pandemic

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I’m not sure I can write fiction anymore. I don’t know how to write a psychological thriller set here and now in this pandemic, this lockdown.

I think of those movies made during World War II that completely ignored the war. Were they set during a slightly earlier or slightly later time? Or an alternative universe?

Should I do that? I don’t think I can do that.

It’s Saturday afternoon in NYC. It’s 20c (68f) and the sun is shining, the air is crystalline, conversations and laughter (!) drift up from the street below, cars drive by, music blares. NYC sounds like NYC.

We’re in the sixth week of the lockdown.1 NYC shouldn’t sound like NYC. NYC shouldn’t be jumping. There shouldn’t be so many people out on the streets. Hundreds of people are still dying here every day. We’re supposed to be quarantining.

I haven’t been outside since Tuesday. My autoimmune disease has been in full flare. I was hoping to go out for a walk today. But, no, it’s impossible. There are too many people on my street.

It’s nothing compared to how busy the streets would have been pre-shut down. It’s our first sunny day after several days of cold and rain. Before the streets would have been jammed. The numbers that are freaking me out are tiny.

There’s no where in the USA it’s harder to maintain distance. NYC is one of the most densely populated cities in the world. Our footpaths are too narrow, so we spill out onto the roads. Many of which are also too narrow. Especially today when there’s more cars cruising around than I’ve seen since this started.

It’s not that people are ignoring the lockdown. We’re allowed to go out to exercise, to shop for essentials. I look out the window: most are wearing masks, they’re trying to distance. But it’s impossible.

I’m hearing a lot of sirens today.

I stay inside and work. But I don’t turn to rewriting the YA psychological thriller or the adult one I’ve written ten chapters of. I haven’t touched either since before I spent the summer in Sydney. The summer of a million fires. The summer of having to wear masks to go outside because the air was unbreathable.

Back then I didn’t work on them because I didn’t know if I should include the fires, by which I mean climate disasters. Neither book, though supposedly set in this world, even touched upon how much hotter, more dangerous and unlivable our world is becoming. Leaving those realities out felt wrong.

The adult thriller begins on a plane. As did my last novel, My Sister Rosa. I love writing scenes on planes. It’s so contained, so intense. The characters are jammed in with hundreds of others, yet also in a tiny bubble.

But the airline industry may not exist the way I wrote it, after this pandemic is over. It may change as dramatically as it did after 9/11, or more dramatically.

I don’t know how to write fiction set in this world.

I work instead on non-fiction book proposals. Books that don’t ignore this world of bushfires, floods, tsunamis and hurricanes and all the other disasters made worse and more frequent by industrialization, by the steady rise in carbon emissions.

But these non-fiction books don’t touch on the pandemic, on this lockdown, on my world right now. That book can’t be written until this over, not well. Besides I don’t want to write that book. There will be a million such books.

When we come out of this pandemic, will we really want to read books about it?

I can’t even read too much about it now. I follow the immediate news, I read a few articles, I listen to the ABC’s Coronacast, but too much of that and I start to freak out. Mostly I read books about the history and future of the fashion industry and talk about it with folks on Instagram.

My account there is a huge part of my mental health regime. It’s where I found a worldwide community of people, who care passionately about transforming the fashion industry from one of the world’s biggest polluters and exploiters of workers, into a sustainable, clean, and ethical one. A deeply important mission done while wearing gorgeous vintage and responsibly made clothes. That’s my kind of revolution.

Maybe when this pandemic is over I’ll write a novel set in that world.

  1. Or is it the seventh? I’m losing track of time. I know it’s Saturday because we do the weekend quiz with the family back in Sydney every Friday and Saturday night. We did the first weekend quiz last night. Thus Saturday. []

Life In NYC In The Time Of COVID-19

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In Sydney the seven-year-old niece has cut her own hair. It looks pretty good. The kid has style.

Here on the Lower East Side of Manhattan, I’m lying in bed at 6am, straining to hear the sounds of the city, but there’s no planes above, no helicopters, no horns honking, no sirens–despite all the reports that say sirens are constant–no cars rolling by with canciones played ear-bleedingly loud, no yelling or laughter floating up from the street below.

No one I know has died of the virus or been hospitalised. Yet. But plenty of my friends have had it. Close friends. All their cases, but one, confirmed by their GP in a video call. There’s no where near enough testing here.

Their cases have ranged from losing taste and smell for a few days, to three weeks of fever, exhaustion, and a crushing vise on their lungs and knife in their heart. Both ends of that spectrum are officially described as mild.

If you don’t wind up in hospital on a ventilator, it’s mild.

I’m in full flare, unable to get out of bed. It’s my usual chronic illness, not the dreaded virus. It feels ridiculous to be lying in bed weeping over an illness that won’t kill me and isn’t contagious. Yet here I am.

Friends of mine have lost relatives–an uncle and a grandfather, so far. I know that list will grow. I pray the beloved elders and ill and immunocompromised in my life, of which there are many, will not join it.

I am, of course, one of them.

This flare has terrified me. Not because of the pain–I’m used to that–but because it’s reminding me forcefully of how vulnerable I am. How vulnerable so many of us are.

I’ve been going out for long walks early every morning: across the Williamsburg and Manhattan Bridges into Brooklyn and back, along the East River Parkway and the mostly empty streets of the Lower East Side, Chinatown, the Financial District, Soho, the East Village.

Sometimes I walk for hours, masked and gloved, making sure that I’m home by eight am. If I walk any later than that there are too many people jogging the bridges and the Parkway, six feet of distance becomes impossible. Joggers run past almost touching me. I recoil.

I avoid the west side of the island altogether. Too crowded.

I’m not sure if I’ll be brave enough to go outside again. I don’t think my body can cope with even a mild iteration of the virus on top of the illness currently ravaging me.

The last time I hung out with a friend in real life was back in early March. I visited Julia at her hat shop on Seventh Street in the East Village, sitting on a stool more than six feet away from her. We disinfected our hands and anything we touched.

We hadn’t seen each other in months, I’d been in Sydney, where I retreat each year for three months to see family and friends and avoid NYC’s winter. I hate the cold and lack of sunlight.

I told her about living through the bushfires, she caught me up on her life here in the city.

Showing far more foresight than is usual for me, I bought a turban. As my hair gets longer and more unruly without its once-every-four-weeks maintenance from Chereen in NYC and Julianne in Sydney, I’m wearing that turban more and more. As my hair turns into a mullet–*shudder*–I’m contemplating copying the niece and hacking at it myself.

I was with Julia in her gorgeous shop for more than four hours. Two people came in. One was getting the final touches on her hat for a formal occasion in May. (So not going to happen.)

She was annoyed by all the fuss about the virus and everything being closed. “Everyone’s over reacting. It’s just like the flu. It will only affect old people and sick people.”

As one of those sick people, I bristled.

Also? She was at least in her sixties. How did she not see that she’s in the endangered demographic?

The second person to come in was a delightful vintage hat collector, who was bringing some recent finds for Julia to repair. I collect vintage clothes. He was my kind of people.

He kept almost touching his face and stopping, muttering, Don’t touch your face. Don’t touch your face.

The same admonition echoes through my head all day long.

I admired the gorgeous vintage brown wool Borsalino porkpie from the sixties he was wearing, flecked with gold and orange, and asked him hat questions, while he danced on the spot, not meeting my eyes, replying succinctly.

He kept his distance, touching nothing. He doused his hands in sanitizer twice in the short time he was in the shop.

The woman meanwhile did not keep her distance and touched everything with the surgeon’s gloves she’d clearly been wearing for hours. She did not once use hand sanitizer.

After she left we disinfected everything.

It seems a long time ago. I bet her attitude has changed. She lives in the city. She’ll know people who’ve had the virus, who’ve died. She may have had it herself.

At first it was hard for any of us to believe this was real.

Now everyone wears masks and keeps their distance. We give each other thumbs up and say, Stay safe. We all know someone who’s had it.

Increasingly many of us New Yorkers have had it ourselves and are wondering if that makes us immune. No one knows for sure.

No one knows much of anything about the virus. How many people are asymptomatic? Do masks help or give a false sense of security? I know I feel safer with a mask on. Should I?

We do know this will go on longer than any of us hoped. There will be no formal events in May. No WNBA season. No Olympics in July. I’m beginning to wonder if I’ll get to do my annual sojourn in the city of my birth come December. Will the airline industry recover? Should it?

When do we get our lives back? Do we get our lives back? Money earning opportunities disintegrate, we lose jobs and insurance and shelter and hope. Friends and family are remote and the internet only partially bridges that gap.

NYC is the epicentre of this plague in the USA, of the world.1 Yet here in my part of the city I can’t see the makeshift hospitals in Javits or Central Park, the hospital ship in the harbour, or the refrigerated death trucks.

If anything there are fewer homeless people on the streets.2 Only a handful of people have begged me for money since I got home. I don’t carry cash anymore. It’s too dangerous. All I can do is say sorry and donate to the organisations helping them.

I take the stairs to reduce my viral load. I’ve not seen anyone else in the stairwell. I rarely see my neighbours, or hear them cough, and when I do we nod to each other from different ends of the corridor. This catastrophe is happening behind closed doors.

We don’t ask how we’re doing. We don’t chat. We’re scared of each other now. We’re scared of everyone.

They could be dying in their apartments and I wouldn’t know.

It’s a lonely apocalypse. The only people I’ve talked to are my building’s lovely super and the masked and gloved clerks at Essex market during the early morning times reserved for the old and the sick.

I disinfect everything I buy. I keep running out of bleach. My hands have developed eczema. It seems a small price to pay.

I thought the bushfires were terrible and they were: the choking smoke blanketing my beloved Sydney, filling the hospitals with people who can’t breathe. Those fires are also part of a global crisis, of climate change, but one that hasn’t yet affected everyone.

But this silent, invisible COVID-19 disaster, has completely transformed all our lives. It’s isolating us, sickening us, and killing us.

And bringing us together. People I haven’t heard from in years have been reaching out, checking up on me. I’ve been bonding with strangers online about vintage, sustainable, and circular-economy clothing.

This really is the worst of times, all over the world, and I know that no amount of dressing up in beautiful clothes changes that. But at the same time many of us privileged enough to shelter at home are being sustained by beauty, by laughter, and joy.

We’re finding new rituals to sustain us as we cope with isolation and disease. We make music and art and reconnect.

There are new sounds in NYC: bird song, louder and more frequent than I’ve ever heard it here, and the new ritual of the 7pm whistles and cheers and banging of pots for the health workers’ shift change. I well up every time I hear it but I smile too.

Suddenly I’m connected to my neighbours: seeing them on their roof tops, balconies, at their windows, down on the street, all of us full of gratitude for the ones working so hard to save this city, to allow it to be crowded and noisy and overwhelming once more.

The way it’s meant to be.

  1. Though do we really know that? So many countries are barely testing and are under reporting infection numbers. Do we really know what’s going on in Iran? In North Korea? []
  2. Which could be for scary reasons: surely the homeless are amongst the most vulnerable to this disease? []

Justine’s Guide to Increasing the Lifetime of Your Clothes

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When I was eleven, my mother gave me my own laundry basket, and taught me how to use the washing machine. I was delighted. Best birthday present ever!

I’ve been doing my own laundry ever since. Few things give me more satisfaction and joy than getting out a really stubborn stain.

No, I’m not joking. I love doing the laundry.

The years I lived in NYC without a washing machine were pure torment.

Here are my tips to longer-lasting clothes:1

Other than underwear:2 wash them less, WAY less. Unless you’ve sweated all over them, clothes don’t need to be washed after every wear.3

I deploy the smell test. Does it pong? If no, don’t wash. If yes, wash immediately!

Jeans should be washed once or twice a year. Tops. AND NEVER IRONED.

I have some coats and jackets that have never been anything other than spot cleaned.

Cold or lukewarm water is better for your clothes and the environment. Ditto with slower spin cycles. Slow good. Fast bad.

Gentle, non-toxic-for-the-environment detergents are best. As an Aussie, I’m a big believer in eucalyptus wash. Anything that smells like eucalyptus is automatically good. It is known.

I swear by Eucalan no-rinse, delicate wash. Yes, I use it for machine washing too. A little goes a long way.

Also, when handwashing? That no-rinse claim? Absolutely true! You don’t have to waste water endlessly rinsing the detergent out. Unfortunately COVID-19 means it is currently unavailable. If anyone knows of a no-rinse alternative, hit me!

Spot clean.

If you spill soy sauce/coffee/oil/whatever, wash that spot as soon as you can, before it can stain. If you’re out (lol) rinse it with cold water in the bathroom pat dry with a paper towel. Never wring! Never rub! Nine times out of ten you’ll rinse out the spill before it becomes a stain.

If there’s still a stain, the internet will tell you how to get it out from whatever the fabric is. I don’t know how I removed stains before the internet. It was a terrible time.

Fabric matters. Silk behaves differently from cotton or the various different blends and synthetics.

Do not despair if you discover an old stain on a favourite piece. While it’s always best to deal with a stain straight away, I’ve gotten some stains out that were years old. Decades old even. And if there was ever a time to finally see if you can nuke that long-standing stain you’ve been hiding with a brooch, that time is now!

Some stains, though, are forever. Le sadness. My new approach is to embroider over the top of them. Visible mending for the win. Do an image search on sashiko. It’s stunning. No, I’m not there yet, but practice makes perfect or, at least, less shit. Now is the perfect time to learn to embroider.

Just because you had to wash that one spot doesn’t mean you have to wash the entire garment.

I handwash (or, if there’s no other way, dry clean) most of my vintage clothes and many of my other clothes too. If I love it I usually handwash it.

I get that most people have neither the time nor inclination for that. Invest in lingerie washing bags. Lately I’ve been recommending guppyfriend washing bags, which reduce fabric shedding. Use the gentle wash cycle, setting it to cold.

I handwash bras. A lingerie washing bag will protect them some, but machine washing will reduce a bra’s lifetime. The elastic dies faster, wires get bent, embroidery and other embellishments unravel.

Handwashing isn’t as hard as people think. It’s mostly soaking and the occasional gentle agitating. The hard work is in the rinsing, and if you can get hold of a good no-rinse handwashing detergent, you take that out of the equation.

Never rub your clothes vigorously. It’s terrible for the fabric. Never wring them either. To dry them, very gently squeeze water out, then roll them in a dry towel and press. It’s astonishing how much water you get out.

If at all possible line dry.

Dryers are the devil. You heard me. They destroy clothes.

Yes, even in your tiny NYC flat, it’s possible to line dry.

Hang clothes to dry in the bathroom. Or in your closet. Just make sure they’re not touching the dry clothes.

Look, I get it. Back when I flat shared, I didn’t hang my clothes to dry in the bathroom. Ewww! Flatmates couldn’t be trusted.

For a long time in the city I was too time and space poor to clean my clothes properly. I would drop them at the laundry. (Never any of my precious clothes or bras.) They would go through the dryer. They would fall apart. It was horrible.

Now I have a wooden folding drying rack. It is joy. Nothing goes in the dryer.

If hanging your clothes up to dry isn’t an option always set the dryer to the lowest heat.

Thus endeth Justine’s guide to longer-lived clothes. You’re welcome!

  1. I understand that some of you are not able-bodied enough to do any of this. I have a chronic illness myself. Some days I don’t have the spoons to get out of bed. []
  2. For some unfathomable reason, some folks rarely wash their bras. Eek! You should probably wash your bra after every 7-10 wears. Obviously this depends on how sweaty you are. []
  3. Yes, I understand that some people are very sweaty. []

Miss Manners Says: DON’T SHAKE HANDS DURING A PANDEMIC!

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COVID 19 (coronavirus) is a big deal. It’s highly contagious and people over 70 and those who have chronic illnesses are particularly at risk.

People like me. I have a chronic illness. I guarantee you there are folks around you who seem perfectly well, who also have chronic illnesses. We are many. And we are vulnerable to COVID 19, to viruses and bacteria. That’s why we won’t shake your hand, or accept your kisses or hugs. We want to live.

We should all be washing our hands for at least twenty seconds. THOROUGHLY. That means back of hand, between fingers, wrists. Dry your hands thoroughly.

Wash your hands before and after going to the toilet, before and after touching food, before and after going outside, before and after being in any public space. If you can’t wash your hands, use a hand sanitiser, remembering that washing your hands is better.

Don’t touch your face! But if you do: WASH YOUR HANDS!

And really, really, really DON’T TOUCH MY FACE! Or anyone else’s that you’re not intimate with.

This should be everyone’s practise all the time. If we all did this flu deaths would plummet. But during a pandemic!? DON’T TOUCH ANYONE! WASH YOUR HANDS!

Come on, people, we can do this!

Learning How To Outline

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I’m not an outliner. I use my first drafts–zero drafts–to figure out characters, plot, setting etc.

But lately that method has not been working for me. My chronic illness caused me to lose my executive function for months. I could not make decisions. Novels are nothing but decisions.

My executive function returned as I learned to manage being sick, but I’m still not as sharp as I was. The parts of novel writing I once found relatively easy, I now struggle with, and the parts that were once hard? Well, you can imagine. This illness has changed my brain.

On top of that I now tire quickly. Writing leaves me exhausted. Turns out that outlining requires fewer spoons than exploratory drafting. Or maybe it’s just that doing something in a different way is energising?

I’m not an outliner. I’ve tried to outline before. Many times. And failed. Outlining felt like scratching at nerve endings. We hates it.

But this time instead of giving up in annoyance after a day or two of struggle, I pushed through to understand what it is about outlining I find so difficult. Why does it set my teeth on edge? Why does it make me shouty? Why do I hate it?

I finally figured it out.

All my novels start with the characters. Even Liar. Although I had the idea of writing a book from the point of view of a pathological/compulsive liar first. I was unable to start writing it until I knew who that liar was. Micah emerged strongly as I drafted. Once I knew her the plot started happening.

Characters first; plot later.

If I don’t know who my characters are, how do I know what they’re capable of? How can I know what kind of plot they’ll generate?

Bingo.

I stopped attempting to outline. I’d already charted the novel’s opening and first few scenes so I started writing them. I wrote chapter after chapter, getting to know my two pov characters, and the people in their lives, which started to generate story, and allowed me to get back to the outlining.

When I can’t go any further with the outline I go back to drafting until I know enough to continue.

I know the end of this novel.

I’ve never known the end of any of my novels before I wrote them. It’s very strange. I worry that I’ve spoiled myself, that I won’t want to actually write it. But every time I go back to drafting after being stuck, it’s so much fun! I love learning more about these characters and what they want and why they kill. The outline is bare bones. It’s not heart or soul.

I don’t have a full outline yet–my illness makes me so very slow–but I have more of an outline than I’ve ever had. It’s wild. Did I mention that I know how this book ends? I know what happens for the first third.

My old reason for not outlining was that standard one: if I know what happens and write it all out then why would I write the whole novel? I’d bore myself to tears.

It’s not true, though.

Even this detailed outline I’m constructing is not like writing the novel. There’s an ocean between: She switches seats on the plane to allow a separated couple to sit together and finds herself next to a stylish Grace Kelly type, looking all patrician and better than you and the actual descriptive passage detailing that event, which reveals her thoughts, so the reader knows and understands why she hates WASPy blondes and why she wants to get drunk and why she fantasises about committing murder.

Outlines and novels are not the same genre. Outlines are barely writing at all. They’re more like notes, than novel writing. It’s the to-do list, not that which is done. It’s the incomplete recipe, not the actual meal. Outlines are mere potential. Novels are life.

It might be that I’ll never just wing it again. That I’ll be all outlines all the time. It feels very strange. But whatever is necessary for me to write novels again.

I’m a novelist. Writing novels has been central to my identity for decades now. It has been agony not being able to write. I thought I had lost myself. Being able to write novels again is everything to me. No matter how slow. No matter how different my methods are. The writing is the thing.

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

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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. []