I can inhale all the way.
Not quite three weeks on my new meds and I can inhale ALL THE WAY.
Scan not required to tell me this is working.
Breathing never felt so good.
I can inhale all the way.
Not quite three weeks on my new meds and I can inhale ALL THE WAY.
Scan not required to tell me this is working.
Breathing never felt so good.
I got an email this week, advising me to save any creative writing from my Goodreads account by September, as they are removing the original writing feature. And my first thought was, “Not The Condor!”
I joined Goodreads in June 2011, and fell in love with the community.
Over 10 years ago Goodreads was like walking into your friend’s living room and checking out their bookshelves, and listening to why they loved their latest read. Which is exactly what Otis Chandler, the developer, was going for.
I was finishing my PhD at the time, and it was my procrastination poison of choice. I spent so much time on Goodreads I was in the top 100 reviewers globally, was the top reviewer in New Zealand, and in the top 100 librarians globally: donating my free labor to wrangle book data for the site. For my 2013 reading challenge I read an impressive 505 books. I also wrote a lot of pretty insufferable reviews, and looking back, it’s hard to understand how I was so sure in my opinions, so convinced my ideas mattered. I would not now be so very careless of the feelings of the people who crafted the words I smashed and shredded with a tiny jeweled mallet of rightousness certainty.
I specifically apologize to Cameron Vale. My 2-star review of The Zebra Striped Shirt was unnecessary. Mine was one of the first reviews, and I yammered on about the price not the craft, and I’ve always felt guilty that my influence sank your career in M/M as it started. You write beautifully, and you never wrote another book under that pen name. I’m so, so sorry if my review contributed to poor sales of that book. I hope you are writing. I hope you are well. I hope you have every happiness, because you deserve it.
The thing that kept me coming back to Goodreads was the community. There were only 16 million users back then, not the 90 million there are now, and it felt small. I made friends. The people I met on GR meant – and still mean – the world to me. GR is why I ended up traveling to the US in 2017, and why I started writing.
But before that, in the summer of 2012, a friend called Isa K wrote a story called The Condor, posting each chapter to the GR creative writing space as she finished it. By the time she was wrapping the story up there were 40-60 comments from readers on each post. It felt like an event, a coming together, to inhale each update and discuss it: like co-creating something as audience and storyteller – the words spinning between us all in sheer joy of community.
Isa K published The Condor on Amazon afterward, along with other books, and we stopped being friends. But I still yearn for that celebration of storytelling at its most basic. Even though we sit around a screen instead of a fire, and on opposite sides of the world, the threads of narrative can still bind us together. It’s just harder to share, now.
In 2013 Amazon bought Goodreads and things began to change.
I don’t remember if it was the algorithm or the review censorship that was the beginning of the end for my experience with the community there. I think it must have been the changes to the reviews because I became upset, and I wrote about it, using the GR creative writing feature. Whereas, by the time the algorithm came in, I added a few disapproving comments to the admin thread and left it at that.
The algorithm changed the way I could interact with my community. GR tried to deny it for a few months, but no longer would we see the updates from our friends as they posted them. Instead an algorithm would curate what we saw in our feed. That’s normal for social media now, but it hamstrung my GR community. The algorithm was the triumph of marketing over free discussion.
But I’m saving my response to those 2013 review changes on Goodreads and I’ve pasted it below. It stands up, I think, and speaks to a time when I cared desperately about a platform I could see sinking under the inevitable sands of commerce, and felt raising my voice could help. Spoiler: it didn’t.
I’ll pull over a few of my reviews, too, over the next few months. GR doesn’t just hold a place in my heart: it changed my life. You only get that once, I think, and it’s worth remembering.
by Emma Sea
How GR’s revised review rules ignore all of postmodern literary criticism.
Published on 2013-09-21 · 340 total people like it
Late Friday, September 20 2013, Goodreads announced a change in review and shelving policy, and immediately started deleting readers’ reviews and shelves. In doing this they became censors. Limiting readers’ ability to discuss the cultural context of a book is censorship designed to promote authors’ interests.
Prior to this Goodreads had always maintained that shelves were up to a reader, and that, short of abuse (which could be flagged) so were reviews. Now Goodreads state that reviews and shelves must be about the book, and unrelated to the author, unless it is “relevant,” such as a biography.
Goodreads deny this is censorship, but rather “setting an appropriate tone for a community site.”
Goodreads state, “we haven’t deleted any book reviews in regard to this issue. The key word here is ‘book’. The reviews that have been deleted – and that we don’t think have a place on Goodreads – are reviews like “the author is an a**hole and you shouldn’t read this book because of that”. In other words, they are reviews of the author’s behavior and not relevant to the book.”
In literary criticism there are several different ways of approaching a book. In one corner there’s practical criticism, New Criticism, formalists, and structuralists. These types of approaches look only at the form and, well, structure of a book. In these kinds of reviews “it is the reader who . . . is in the end, in the absence of authorial control, left alone with the text,” ¹ and the reader limits themselves to “the words on the page.” ²
This would appear to be Goodreads’ approach to reviewing, when they say, “We believe books should stand on their own merit.”.
From the 1970s on a new approach, or rather, new approaches, to literary criticism arose, which examine the social, political, economic, and historical contexts to any particular book.
Feminist literary criticism discusses books in terms of the gendered roles and positions of the author, character, setting, or arena of cultural production.
Marxist criticism sees a text as a tool in struggle for economic and social capital. We might buy a book, for which we have to turn ourselves into a unit of production, or we might be given an online fic for free, and in return we give the author social capital, and reviews might discuss aspects of this process.
In postcolonial criticism you might examine the author’s position as a product of a hybrid culture: a mix of indigenous and colonizing forces.
What all postmodern approaches to reviewing books have in common is that they acknowledge that a book does not exist in a vacuum: it did not spring, fully-formed, into being. An author wrote it as a particular form of cultural and economic production in a particular society at a particular time.
Goodreads state, “Some people are perhaps interpreting this as you can’t discuss the author at all. This couldn’t be further from the case. The author is a part of the book and can certainly be discussed in relation to the book. But it has to be in a way that’s relevant to the book. Again, let’s judge books based on what’s inside them.”
A member’s review of an Orson Scott Card book was deleted following the Goodreads announcement, because it focused on Card’s well-known anti-gay and anti-gay marriage views. This fits within a wider cultural call to boycott the upcoming film.
In a queer Marxist critique of this book we would absolutely want to state that the funds you use to purchase it are in part used by the author to fund anti-gay marriage organizations and activities. Of course Card is allowed to do this: he is free to believe what he wishes. But equally an informed reader may not wish to financially support him in these acts. Card’s anti-gay platform is not directly relevant to the “words on the page” that Goodreads wants reviews to be about, but it is directly related to the social and cultural context of the book.
By deciding what is, and is not, allowed to be discussed in a review, by removing discussion of social context, and saying that only the words on the page count, Goodreads is ignoring fifty years of development of literary criticism, and is engaging in censorship.
This leaves us in a space where indeed, as an astute reader has already pointed out, a review of Mein Kampf that called Adolf Hitler an anti-Semitic asshole would break Goodreads’ new review guidelines and Terms of Service.
Yes, Adolf Hitler is a straw man, but what has equally been banned by Goodreads are shelves that indicate an author has “behaved badly.” This might be an author who emails the reviewer offering free books if their neutral review is edited to be more favorable, or an author whose fans flame a negative review. One of these may be out of the direct control of the author, but both are about the social context of the book.
Books are one part of a vast multi-media network of tweets, blogs, films, magazines, statuses, television shows, face-to-face conversations, Skype chats, and emails. Pretending that the words on the page are unconnected to any of the rest of modern communication is . . . well, I want to say it’s absurd, but it is not absurd. It is marketing.
Goodreads’ new rules are a fundamental shift that moves the site from a place for genuinely open discussion and engagement, to one that places the requirements of authors above the requirements of readers.
It is censorship.
¹ Bertens, H. (2008). Literary theory: The basics (2nd ed.). London, UK: Routledge, p. 59.
² Bertens, H. (2008). Literary theory: The basics (2nd ed.). London, UK: Routledge, p. 61.
Hello friends. Today I started my new meds, and I spoke to a woman online who got four years without progression on these meds. Thank you, yes, universe, I will take those four years.
I also ordered a new planner that starts 1 July 2022 and ends 30 June 2023. I do not need a new planner because I am already in one that works perfectly fine and has months left, but I want a completion date further away than 6 months.
Here’s the one I bought, btw (not an affiliate link). I had the same kind in 2019 and it works great for my brain.
Now, let’s talk longer-term goals. Turns out there is a total solar eclipse in New Zealand in July 2028. That is only six years away! Hell, yes. Saros Cycle 146, I choose you! Want to find out when your nearest eclipse is coming up? Wikipedia is your friend.
The writing is going really well. The story is still a bit of a jigsaw, but I have all the corners and edges in place, as well as big sections of sky and clouds and trees. I’m averaging 15 hours a week of solid focus at the moment, which isn’t bad on top of full-time work, considering I’m in bed pretty damn early.
So, that’s me. Things are good. I hope you’re good too.
My second-line treatment of fulvestrant and palbociclib stopped working. I didn’t need the test results to find out. The truth is in my chest, in that lumpen foreign mass prodding my right lung with each inhale, prickling my mind when I lie in bed at night.
Do you have asthma? You know how, with asthma, when you breathe in it feels like everything’s full already and you can’t get more oxygen? A lung met is a little like that: an uncanny something taking up space where the air would like to be.
It’s a very weird feeling.
I think I also have a new small met in my throat which says “hello there” when I swallow. Gotta wait on the next scan to confirm that one.
I’m at the crest of the roller coaster. When I gaze around I can see for decades. But right now my hands are gripping the harness and I’m focused on the track ahead: there are corkscrews and a 360 in front of me.
When I went to Disneyland with Katie in 2017 we rode California Screamin’ for hours, heading back down to the ‘single rider’ queue again and again.
There’s no do-over this time.
I have more medication options. Not as many as I’d like. I am waiting on next steps.
I have to finish the story I’m working on. That’s priority. I have to prune everything else and focus on rest, on writing, on pulling in a paycheck to pay the bills, on the people I care about. When I have confirmed there’s less than 6 months left I can cash in my retirement fund and stop work and just focus on three out of those four. Ain’t that a double-edged sword.
I can make five years, surely? I can make five. March 2023. That’s nine more months. Wow, that feels like a big fucking ask right now.
Still, I’m asking, Universe. Give me the five.
Wiki was diagnosed with metastatic breast cancer a few months after me. We went to the same book group. We didn’t attend together very often. I worked nights, mostly, and she traveled for work. And she was busy. Always busy.
She was busy because WIki changed breast cancer treatment for everyone in NZ.
Unluckily for WIki, pretty much right after diagnosis, she was recommended to start on Ibrance (Palbociclib). But Ibrance wasn’t funded in New Zealand.
Ibrance cost NZ$5800 a month.
On the New Zealand median salary, you’d have to work 6.5 weeks to buy one month of Ibrance.
So Wiki cashed in her retirement savings and bought herself some time.
And then she organized a march on Parliament, and a petition, and dedicated herself and her time and her family’s time to changing the way medications are funded in NZ. Dedicated herself to getting Ibrance and Kadcyla funded by PHARMAC. She didn’t only think of herself. She thought of everyone.
Wiki always thought of everyone else first.
In May 2020 PHARMAC started funding Ibrance for metastatic breast cancer patients. So this year, when Tamoxifen stopped working for me, Ibrance was an option.
I picked up my next month of Ibrance the same day Wiki died. That’s it in the photo there. See that cost? Five dollars. That’s $3.41 in US monies.
Wiki did that.
Wiki is the reason I get to be here right now.
When life is short some of us write gay ghost stories. But people like WIki change the world around her to make it better for everyone. To make it fairer.
Wiki was funny, and sweet, and even when she was tired and sick she radiated warmth, and joy, and love.
Rest easy, Wiki. I’ll catch you on the other side.
The average life expectancy following a stage 4 diagnosis in New Zealand is 16 months . . . Going by US figures, median survival for my age group is 39.2 months, which statistically gives me until mid-2021.”
I did it.
I made it past median survival.
My first-line treatment – Tamoxifen – stopped working at the beginning of 2021, and my cancer kind of took off with a hiss and a roar in June. I’m on Palbociclib (Ibrance) and Fulvestrant now. These weren’t even options in NZ before May 2020, and I’m incredibly grateful to the women before me who fought to have them funded through Pharmac. My treatment team doesn’t have enough data yet to really judge if they are working, but there are other drugs if they’re not helping – or not helping enough. I try just to think about one week at a time. My job helps me focus on getting done what needs to get done.
I’m so lucky to have the job I do and I do not regret leaving academia for one second. I work with amazing people and the pandemic has expanded the scope of what I do enormously, in ways that give me the deep satisfaction of service.
I wish I’d looked beyond beating my head against a brick wall at universities for so many years. I got hyper-focused on what I thought I wanted, instead of looking at the daily misery I was actually going through. But this is a thing I cannot change and I will not waste time regretting it now.
I like my small town. At rush hour it’s 12 minutes from home to work: I timed it. It has an indie bookstore and wonderful cafes. Because I am not living in Auckland I am escaping the worst lockdowns, and there’s still a sense of a semi-normal life. I finally got my COVID vaccine shots in July 2021, which was right before our Delta outbreak in August.
In 2020 I released two books, and although I haven’t released one yet in 2021 I do hope to have one out in the next 6 months. The words still tick over slowly.
In 2019 I also wrote:
The five-year survival rate – i.e. till 2023 – is 36%, which isn’t negligible. There’s definitely a good chance I will make that.
I have a great chance. I’ll see you back here on 20 March 2023.
Hi friends. NightDocs on YouTube has curated a 90 minute documentary on the attempted coup at the US Capitol Jan 6, 2021, made entirely of live YouTube/Instagram/FB live/news footage, showing a “minute-by-minute accounting of the events leading up to and on January 6, 2021 when Trump supporters stormed the US Capitol in an attempt to stop the counting of the electoral votes cast by the states to certify Joe Biden as the next president of the United States.” YouTube has made this video age-restricted, non-searchable, and non-sharable. which is a crying shame, at it’s excellent.
Video cannot be embedded due to those sharing restrictions, but if you click on the “Watch on YouTube” link below it will take you to the site to see it. Watch and share. NightDocs states “this video is not intended to be political commentary, rather it is meant to lay out a factual accounting of the important events of the day.” Time codes for key events are in the description.
PS This is totally how the setting for The Arroyo starts.
The second I see Colt I know he’s the boy for me.
But Colt’s shipped in to be Sponsored by Hank Fisher, the local Company rep. Five years with Hank and Colt will make contacts, learn how the Company works, and more importantly, pay off his debts so he can live free. Stars, I want Colt for mine, but I can’t offer him what Hank can. I’m no-one.
I run Caffeine Savior, a coffee shop on Demeter, an icy rock in the Carina Constellation, serving indie miners and gas rig workers escaping the close confines of their two-month shifts, with millions burning a hole in their cred chips.
Once I see Colt, I know I’ll wait for him, no matter how long it takes. But when Hank proves himself unworthy of Colt, I have to step in. Colt needs to be treasured and kept safe, no matter what it takes.
Savior is a 33,000 word m/m romance novella with insta-love, very mild hurt and a whole lot of comfort, hand-feeding, and coffee. You can buy Savior here or read it on Kindle Unlimited.
Caffeine Savior. That’s what started it.
Over lockdown I missed my local coffee shop the most. I’m an introvert, and I work 4pm to midnight, so I don’t have a big night-time social life, and I don’t like shopping in physical stores, and I don’t play sport, and I don’t have many friends here to miss seeing. What I did miss was going to the coffee shop each day to write.
Here in NZ we were so, so lucky in 2020. We entered lockdown on 25 March, and it was the most restrictive in the world. Only a few national chains of supermarkets were allowed to open, and pharmacies, and medical care providers. No takeaway foods were allowed, and no online shopping, except essential supplies. But because it was a comprehensive lockdown, it was short. From April 28 we were allowed to buy takeaway coffee, ordered by app only, and on June 9, when we went back to level 1, we could go to a coffee shop again. Or brunch.
When I was writing Home there was originally a whole section where Vic and Ryan turned the pub into a coffee shop. Thematically it didn’t work and I cut it out, but the idea lingered. This year I’ve also been thinking about Mars colonization, and this had me wondering exactly how much rich people would be prepared to pay for real coffee, in space.
Home is dark, and I after I finished writing it I needed something floofy and light, with insta-love and snuggling and coffee, so naturally I wrote a Space Coffee Shop.
That book is Savior and it’s out now.
Savior is not an M. Caspian book. It’s not dark. This is a comfort read, where two men fall in love and get together to have kisses and sex and the bad guy loses. So it’s under my A.L. Anderson pen name, because with A.L Anderson you know no-one’s going to get eaten alive by ants.
I did something incredible last night. I drove to my local indie cinema, stood in a queue, bought tickets, filed into a theatre, sat beside a stranger, and watched France McDormand hold us all spellbound in Nomadland.
We ate ice cream. No-one wore a mask. There was no social distancing.
Because there is zero community transmission of COVID in New Zealand.
I know how lucky we are. I hope it lasts. This new strain sounds wicked and it looks like NZ is about to introduce pre-arrival COVID tests for travelers from the UK and US, even though everyone entering NZ spends two weeks in quarantine.
The vaccine is tantalizingly close yet I’m already horrified by noises of doubt, scepticism, and hesitancy coming from my co-workers. My throat closes with despair at the thought of having a vaccine people refuse. I don’t know how we solve this.
My fervent wish for 2021 is by this time in twelve months everyone in the world can stand in a queue, buy a movie ticket, eat ice cream and wonder at the perfection that is Frances McDormand.
To relax I watch a lot of videos of South Korean street food vendors, and small specialty shops making exquisite treats. I can’t get over how spotless everything is compared to indie NZ food stores, and how much love and care and time is put into the food. And I marvel people can cover rent and food costs and OMG the labour costs, and still make money making small batches by hand.
It really only crossed my mind this weekend, when I was watching a documentary on growing household debt in South Korea, that maybe they’re not actually making money.
At 27:15 there’s a snack shop owner talking about his financial ruin, and mentions his machine for trendy ice creams cost US$9700, which he funded borrowing from third-party lenders at 28%. (The subtitles say ‘stick’ ice cream, but whoever wrote those wasn’t hooked on YouTube food porn, as these were actually Jipangyi, or ‘cane’ ice creams, popular around 2015-2017.)
Here’s the machine that makes the cones, which explains why he spent US$9700. (Well, not why, but you can see this kind of food engineering is spendy).
He says he “couldn’t use” the machine after a month and I have questions. Because cane ice cream was no longer fashionable? Because it broke down? Because his business has gone under by then? I vote it broke down, because that equipment looks like Finicky Trouble
Exactly how many ice creams was he expecting to sell, and at what price, to make enough to cover that kind of investment for a fad product, in an industrial city that might on paper have a high GDP per-capita, but that figure is generated by the world’s largest ship-building yard, the world’s largest car assembly plant, and the world’s third-largest oil refinery?
Because the vendors on the street food-porn channels I watch make the food service industry look idyllic, I want to believe they make a prosperous living for their owners and workers: enough for a happy, peaceful life. Watching the debt documentary brought home to me that’s very likely not true. That instead, the workers are underpaid and exploited the same way they are everywhere in the world, and the owners lie awake at 2am stressing about overheads and negative gearing. And although this is a weird way to get there, it makes it so happy I have a basic call-centre job that covers my living costs and makes me enough to commission a book cover now and then, and lets me write books I want to write, and I don’t have to worry about those books making any money. I have a tiny, happy, peaceful life, which is a gigantic privilege. It means so much to be able to put the stories in my head out into the world. Thank you so much to everyone who bought Home. And who pre-ordered it, even! You’re incredibly kind, and I just hope you enjoyed reading it.
My daughter used to work at a pub, and her colleague said there was a ghost in the pub, stuck there, hanging around, and immediately Ethan popped into my head, and I knew I had to write Home. Although Home will never fund the repairs to my leaking roof, it’s out there in the world, and if even one person likes it, that’s enough. And I didn’t have to borrow $9700 from loan sharks to see my vision turn into reality. Wooo!
May you all experience happy, peaceful lives this week, friends, especially those of you in the United States. Be kind to yourselves, and stay safe.