pyraxis: Pyraxis (Pyraxis)
2017-06-30 07:21 pm

Shashigai

I guess I need to get it together to make a public post. My partner, [personal profile] shashigai, died from complications of cancer last Sunday night.

We've been keeping it on a private filter because he didn't want a lot of people to know he was ill. He believes that it's too easy for people's expectations to shape reality, and he didn't want to live the reality of being treated like an invalid. He wanted his accomplishments and his mistakes to stand on their own, not to always be tainted by "You're doing so well, for somebody who's ill," or making excuses for him. It carried over to offline life as well, and his work. He has an advanced degree in psychology and for the past few years he's been teaching online. Being a college professor was one of his dreams.

I've known him for twelve years, and we've been together for ten of them. When I met him, he was working in a hospital as a psychiatric crisis clinician. He's always had a thousand stories from his time there, from the silly ones like the woman who went dancing naked down a public street and when questioned, sung out, "I'm a treeeee! My branches need to grow free in the wind!" to the serious ones, like the former alcoholic who was being written off by the doctors and herded off to rehab. Under questioning from Shashigai, she admitted she felt a "tight band around her head", which he correctly identified as carbon monoxide poisoning. He sent a fire brigade to her apartment, where they found a gas leak behind her stove, the source of the faint hissing noise that everyone else had been calling her hallucination.

He's always been a storyteller. I only know a fraction of the stories in his head and I'm sure I could only tell them a fraction as well. He's left me journal after journal of writing. When we met, I introduced him to our world, Karn, and he took it on as his own. He made it his home in the Dreaming, and his presence has left it infinitely richer. I believe he is still there, both as his own self and in the dozens and hundreds of people we met there. We discovered other worlds together - Ua, and Beren Gan - and wrote stories and made art and stood together in fascination and admiration as it breathed into life.

We've fought like cats and dogs, we've screamed at each other and hurt each other, and I hope that in the end it was enough for me to stay with him when he acknowledged that there was no other treatment to be tried and the only question left was how should it end. He asked for his cowboy boots and his Superman hat, because that's the kind of guy he is. He's been defying human physiology for as long as I've known him. He's set me on fire (it was an accident!) and I've cut him on purpose, and beyond all that, I did every damn thing I could to support his free will in a society that is all too quick to disempower. He'd disagree with that and in the worst times he'd call me lazy and selfish, but we hung the fuck onto each other through the storm. We were proud of our track history of resolving conflicts.

He is a collector and a tinker and an idea person. He can name every brand of fountain pen and clean them to work again too. He could fix our dryer and our internet and cook like a professional chef. When we went out to eat, he would pick the best dishes and reproduce them at home by taste. I've managed to save some of his best recipes and I'm sad for all the other ones that were never written down. He did his best to teach my reluctant self not to be afraid of breaking things.

We went camping together and he took me for a walk through the deep woods at midnight to show me the delicate white mushrooms that creep out of the ground and the blossoms that only open at night. He knew all the secret places in the town where he lived, like the little tea hut at the end of the trail where we shared a thermos of ginger tea. He gave me a pen that could light up, for writing at night, and any number of blank books and journals in encouragement to write. We went hiking in the early morning so that we could be painting watercolour as the sun rose. I taught him everything I could think of about painting, so that he went from hesitating to do anything more than mix colours, to painting lighthouses and clouds and landscapes from Karn.

I could keep going. He helped me get my dream job despite my frantic efforts to take the first halfway decent opportunity that would have gotten us out of one place where we were living. He helped me rediscover my sport, rock climbing, and took me to the climbing gym religiously every weekend despite the fact that he often wasn't well enough to climb himself. He used to say that one of his biggest mistakes was allowing his former partner to discourage him from his own sport of marathon running. He ran ten marathons before she got to him, and he finished nine of them.

He said he'd lived enough for six lifetimes and blamed it on his ADHD. It still tears me up to think of all the things we still wanted to do together. We were in the middle of a move across the country which we had to delay because of the illness at the end. We were just buying a house together and ready to start a new life. All his things are halfway across the country now and I'm going to be putting pieces back together in the place we chose to suit both of us. I want to honor him and I want to share his stories with the world. I only hope that he can still see it.
pyraxis: Pyraxis (Pyraxis)
2017-04-30 05:26 pm
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RIP Polly Samuel

Also known as Donna Williams, the author of the Nobody Nowhere autobiography series, Exposure Anxiety: The Invisible Cage, many other books, and the music albums Nobody Nowhere (2000) and Mutation (2005). She was also a fine artist and performing artist and gave presentations on autism all over the world.

She and her work had a massive impact on our life. )

She answered the next day. )

~

In the dream home that j-t had designed in her head, there was a reproduction of Donna Williams' sculpture My World-'The World' at the end of the entry hall/art gallery.

A life-size bronze sculpture of a nude young woman, holding an apple high in her right hand and gazing into it. Her left hand is behind her, palm out, as if to ward something off.

I just discovered she's left an incredible array of entries in her blog about her thoughts preparing for death and how she would like to be remembered afterwards. I'm going to have to read through this slowly 'cause I know I'm going to end up crying a lot.

She writes, "I felt really strongly I didn’t want a funeral and when I learned I didn’t have to have one, or a grave or any of the trappings, it fitted me. ... I wanted those who loved me to remember and celebrate me in nature, where I belong and will endure in a spiritual place and to make a personal alter or plant a plant to commemorate me where they can commune with me within their own world, for I am a patchwork of all who loved me just as they are, so this is where I live, in life, and after leaving my body."

We're not in a place yet where we can do this. So instead I'm going to take a risk and set this entry to public, at least for now.

Edit: Removed the "Vale" from the post title, which I learned is actually a Latin honorific for the deceased, meaning "farewell", not a first name as I had thought.
pyraxis: Pyraxis (Pyraxis)
2016-07-28 11:50 pm
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Book review

Crossposted to [community profile] 50books_poc.

Pierced by the Sun by Laura Esquivel

I thought I wasn't going to like this book. I'd rather read about a protagonist I admire, or at least one I might like as a person. There's not a lot to like about Lupita at the beginning of the story, and the first few chapters show all the signs of disintegrating into a preachy literary slice-of-life tale.

But Laura Esquivel surprised me. The seemingly random series of events surrounding the death of a local political figure start to shape up into a compelling mystery. As Lupita stumbles through her days, the reader gets a sense of a vivid social climate surrounding her, and the whole story is saturated with the cultural details of everyday life. It becomes clear she's in a lot of danger, and she barely escapes with her life on more than one occasion.

It's a murder mystery made of feeling as well as deduction. I've read a lot of detective fiction where the main character is coldly rational. Lupita is anything but rational, but she has a powerful intuition that serves her just as well. It was a breath of fresh air to realize that the author was deftly illustrating how it could be possible to solve a crime without high education or legal brilliance in an environment where the police are just as corrupt as the criminals. The character development is handled with grace and realism, and I really had to take back my initial judgements about Lupita's character.

Spoilery discussion of the ending )

Regardless, I really enjoyed the book and I'd recommend it to people who like mysteries with a dark or unusual bent.
pyraxis: Pyraxis (Pyraxis)
2016-03-29 10:22 pm
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New game

We discovered a new game at GDC that's been my addiction for the past few evenings. It's Niche, a genetic survival game that's sort of a cross between SimLife and Watership Down. You start with Adam and Eve, a pair of little foxlike creatures that don't have an official name yet, and you have to breed your people into a whole tribe while exploring their territory, finding food, and fending off carnivores and illness.

It's made by a small group of people from Switzerland, an indie team, and it's still in the very early stages. They've been Steam greenlit but haven't started a Kickstarter yet, and the publically available build of the game is still a demo version that you can't save. I shut down my computer every night because it has a really loud fan, so I've been obsessively playing the beginning of the game every evening but rarely making it past generation 10 or so.

At GDC they had a little stall and they were running a contest where if you could breed your little tribe to ten members, you would get on the list for a free early access key when they get that far. We are on the list. :) If you join their Facebook playtester's group, you can get a bleeding-edge recent version of the build which is better balanced than the public demo.

The best part about it is it's turn-based. And it has nothing to do with war. It's rare to find a good turn-based strategy game that's not about nation vs nation.
pyraxis: Pyraxis (Pyraxis)
2016-02-14 12:29 am
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Too many things to do

I'm procrastinating by playing Drawception.

It is a ridiculous cross between Pictionary and Telephone where someone makes a prompt, the next person does an awkward 10-minute sketch of it in a little app like Paint, the next person guesses what the sketch was, on and on for fifteen iterations until the end result in no way resembles the prompt. It is oddly hilarious and also addictive. I figure what the hell, at least it's drawing practice, right?

Three sets of three drawings and prompts.
pyraxis: Pyraxis (Pyraxis)
2015-08-12 11:28 pm
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Shiny new gaming filter

Hey, so I created a new journal filter for posting more technical gaming stuff that's unlikely to interest anybody who doesn't actually play the game. Which currently is Minecraft, but in the past has been the Mass Effect series, Myst series, and who knows what else we'll get interested in enough to post about.

Shashigai, Vlad, Spacerobots, you're on it. Anyone else want on it, just say so!
pyraxis: Pyraxis (Pyraxis)
2014-06-29 01:42 pm
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Signal boost

Kerry and the [personal profile] plures system are currently taking design and art commissions to help pay for living expenses.

Commission post with work samples and turnaround time is here!

Banner: Art and Design Commissions
by members of Plures House ♦ as of 27th June 2014


We've worked with these guys and so have several people we know. They do quality stuff, and for a reasonable rate. If you have any graphic design needs, or you're looking for fun custom icons or css blog layouts, check out their work.
pyraxis: Pyraxis (Pyraxis)
2014-06-17 11:09 pm

History of community

I want to spread this long but incredibly important Tumblr post about the history of the autism and multiplicity communities everywhere I can.

We weren't a part of all of the groups and initiatives described there, but we know some of the people involved. Our place was on the forums, the rise and fall of various forums between 2004 and the present.

I want to talk about one thing. The importance of freedom of speech and an uncensored space in the development of a community. Everything Amorpha/S. says about the Dark Personalities mailing list has been mirrored in Daria's and my own experiences of the unmoderated autism forum we have been a part of. It is imperative to have a space for people who have been cast out of other communities for being too controversial, for saying critical things, for breaking social rules, for pissing off the wrong person. When there is social upheaval because huge new ideas have come to light, there is an urgent need for space where they can be spoken about freely, hashed out, argued about, screamed about. In the brouhaha over demanding trigger warnings that has even spread to mainstream media in the past year, I want people to understand why it is important to keep places where trigger warnings and other kinds of content policing are not required.

It's still difficult to write about this because I am an intensely private person and used to keeping up mental boundaries.

Thanks Kerry for the link on your journal. (This one.)
pyraxis: A dark stone entrance made by laying a slab of stone across two other boulders, in a forest near the hills (Teiranen)
2014-03-01 11:06 pm
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Vigil

The Day of Mourning was today for disabled people who were killed by the people who should have been caring for them.

The List is too long.

(Disturbing content, obviously, especially for people with caregivers.)

When a disabled person is killed like this, all too often there is an outpouring of sympathy for the killer. An assumption that the burden must have been too great, platitudes that the disabled person is in a better place now, the false judgment that their life was not worth living because of this or that arbitrary declaration of "quality of life".

Every one of these things forgets that the disabled person is a person, who deserves first and foremost the same mourning and the same justice as any other person.

Caretaker fatigue is real. But it is no excuse for murder. The tunnel-vision that people get when they are drained and exhausted, where they can't see alternate possibilities, must not end in destruction. The things that they tell themselves in order to get through the day, about their own necessity and how the disabled person could not continue to exist without them - they may be comforting in the moment but they lead to bad places when taken too far.

Parts of society are very rich, in money and in caring, in attention and communication and knowledge. Some of these resources need to be redirected so that those who are cared for do not end up in hidden vortexes where other people write them off as no longer fit to be alive.
pyraxis: Pyraxis (Pyraxis)
2013-08-12 02:51 pm
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Spacerobot Studio

The fine folk of the [personal profile] spacerobotcrew are holding the grand opening of their etsy store!

Spacerobot Studio business card image. www.spacerobotstudio.etsy.com - Celebrating Neurodiversity, Creativity and Alternative Communication. Status necklaces, Neurodiversity Pride jewelry, shrinky dinks, and more!

www.spacerobotstudio.etsy.com

Celebrating Neurodiversity, Creativity and Alternative Communication. Status necklaces, Neurodiversity Pride jewelry, shrinky dinks, and more!

You can also follow them on Twitter under SpacerobotStudio.

Check it out. The Spacerobot Crew have been developing and testing some of this stuff for years as an alternative communication method for themselves: signal cards on a necklace to say whether they're up for being approached and talking, and how much energy they have for people-interaction.

For autistic people or others who have difficulty getting the message across through words or body language, these tools are really helpful. Thanks to the Spacerobots, they're cool to look at as well.

They've also been developing a line of steampunk-inspired jewelry and neurodiversity pride pendants.
pyraxis: Pyraxis (Default)
2012-09-16 05:01 pm
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Awesomeness

(from [personal profile] acelightning via [personal profile] browngirl)

Government-funded transgender ad campaign that's going to be coming out in DC, USA, in fall and winter 2012.

Image under cut )

More variations on the ad here.
pyraxis: Pyraxis (Pyraxis)
2012-02-24 10:16 pm
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If it bleeds...

Today's hilarity, discovered thanks to the guys at work!

pyraxis: Pyraxis (Pyraxis)
2012-01-18 11:53 pm
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Pyraxis the groupie

MPAA calls the Internet going dark in protest of SOPA 'An abuse of power'. In related news the Eye of Sauron accuses Hobbits of terrorism.
- plurk via [profile] dejablue7

---

Half my friendlist seems to have gotten caught up in a My Little Pony craze. I couldn't help but join in.

Fanart... )
pyraxis: Pyraxis (Pyraxis)
2011-06-04 08:50 pm
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Help change the DSM-V

The APA (American Psychiatric Association) workgroups who are considering proposed changes to the DSM-V have opened up a website to comments from clinicians and other interested people.

All you have to do is register on www.dsm5.org, then log in and select a condition from the Proposed Revisions menu.

Autistics, multiples, anyone else who could be diagnosed with a condition that's being revised, I'm looking at you. ;)

Members of [livejournal.com profile] ksol1460 on AstraeasWeb wrote an excellent summary here of the proposed changes to Dissociative Identity Disorder. For the first time, they're considering a criterion that would require significant impairment in day-to-day functioning. There's also a criterion excluding possession experiences in the context of cultural practices and religion. IMO it could help remove some of the stigma attached to multiplicity, the assumption that it's automatically a disorder that must be fixed.

In terms of developmental disorders, they're merging Asperger's into Autism Spectrum Disorder and removing the requirement of early childhood speech delay. I know, this is old news, but this is the first I've heard that they're seeking feedback from the community. So if anyone objects, now's the time to say so.

They're accepting comments until June 15th.
pyraxis: j-t as Sen from Spirited Away (j-t)
2011-01-23 12:33 am

Tarot: Ace of Coins

I'm back to working on the Karnese Tarot project. I'm not sure why this is calling me so much more strongly than the 3d character modeling project did. Maybe it's just easier on the brain - painting is much more focused than 3d work, where you keep needing to jump between aggressive experimentation (to learn the software), visual eye (to make it look good), technical fiddling (to figure out which tools to use for what), and the big picture (because otherwise it's very easy to waste time on detail that's never actually seen). Maybe it's because it's all soft skills. Maybe because the pressure's off.

I'm still going to keep working towards 3d, but meanwhile here is another tarot painting.



The meaning of the card (coins and pentacles are equivalent)

He is tiroth, who are jungle folk and crafters. Also very easily distracted by pretty shiny colourful things. :)

I noticed while I was working on this, how similar the composition was to a pen-and-ink I did six years ago. Read more... )
pyraxis: Pyraxis (Pyraxis)
2010-12-29 08:46 pm
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Hiko and trauma

My parents' cat got traumatized. The vet told them. My mother doesn't even know how to pronounce "traumatized". She tries to make the first syllable rhyme with "cow". The cat, Hiko, likes my dad but he's terrified of me and hisses at me and runs whenever I come close. He wasn't like this last year when I was here. He doesn't even look like the same cat.

They said they didn't know what caused it. I asked if he'd gotten lost or locked outside overnight and they said no. Then when I pointed out that my brother used to come stomping towards him to make him run and then chase him, they acknowledged that my brother wasn't always a very nice person. Essentially they admitted that my brother did it.

I took a little bit of cream that I was going to use to make candy and put it in a bowl and got the cat to approach me long enough to take a few licks. But then the other cat, Rutu, the curious and healthy one who's just growing out of kittenhood, tried to push her way past. Even when my mother distracted her in the other room, Hiko wouldn't come near the cream anymore.

I couldn't figure out whether to take the cream away and try again later, or whether to leave it for him. Hiko didn't want to approach it while I was sitting nearby, even though I wasn't making eye contact. But if I left it, Rutu might just push past and get it. I put the bowl in the fridge. Anyone have suggestions for how to approach it?
pyraxis: Pyraxis (Pyraxis)
2010-11-02 12:30 am
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On speaking the truth

Today was Communication Shutdown Day for autism awareness. Supporters of the AEIOU Foundation, which does early intervention treatment for autistic kids, bought a $5 app and signed out from Facebook and Twitter.

Today, in rebellion against people who think turning off Facebook could mimic the autistic experience, members of the online autistic community declared this to be Autistics Speaking Day [ABC News].

Today, The New Republic, a satire blog which dared to call out the autistic owner of the WrongPlanet forum for selling out to Autism Speaks and allowing their executives to censor members' words, was taken offline after being threatened with a lawsuit from Autism Speaks an internet therapist in California with an agenda.
pyraxis: Pyraxis (Pyraxis)
2010-09-10 08:30 pm
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A case for psychic cleanliness



... and the reason [livejournal.com profile] shashigai and I always sign off or say goodbye with a traditional Ua or Karnese farewell.

Courtesy of xkcd