M. Caspian's Blog, page 16

An actual job ad

in my inbox this morning.

Welcome to New Zealand.

Hope, memory, and activism: Rebecca Solnit freebie

Rebecca Solnit is one of my very favorite non-fiction authors, not for her best-known Men Explain Things to Me, but for her memoir The Faraway Nearby. I’m actually reading her book Wanderlust: A History of Walking right now.

In response to Tuesday’s election results Solnit and her publisher, Haymarket Books, have just made her book Hope in the Dark free for download, for the next four days, at this link. You do need to sign up for a free account with Haymarket.

“Tracing a history of activism and social change over the past decades – including the fall of the Berlin Wall, the Zapatista uprising in Mexico to Seattle in 1999, and the worldwide marches against the war in Iraq, this title proposes a vision of cause-and-effect relations that provides grounds for political engagement.”

“Memory produces hope in the same way that amnesia produces despair,” the theologian Walter Brueggeman noted. It’s an extraordinary statement, one that reminds us that though hope is about the future, grounds for hope lie in the records and recollections of the past. We can tell of a past that was nothing but defeats and cruelties and injustices, or of a past that was some lovely golden age now irretrievably lost, or we can tell a more complicated and accurate story, one that has room for the best and worst, for atrocities and liberations, for grief and jubilation. A memory commensurate to the complexity of the past and the whole cast of participants, a memory that includes our power, produces that forward-directed power called hope.

Amnesia leads to despair in many ways. The status quo would like you to believe it is immutable, inevitable, and invulnerable, and lack of memory of a dynamically changing world reinforces this view. …

One of the essential aspects of depression is the sense that you will always be mired in this misery, that nothing can or will change. … Things don’t always change for the better, but they change, and we can play a role in that change, if we act. Which is where hope comes in, and memory, the collective memory we call history.

Looking for new shores: Planning road trip one

As I mentioned when I lost my job this year, I really need to leave Auckland. I just haven’t done anything about it yet. I’ve been under the thumb of my depression for the last couple months and I’ve found motivation difficult to come by. I’ve been sleeping a lot. But inactivity will not help. I need to take some action to improve things. It’s time to find a place I want to move to.

The Kapiti Coast. Photo by Aiden on Flickr, used under a Creative Commons Licence

One of the reasons I’ve been struggling is that a few months back my mom came to live with me. Her Multiple Sclerosis has caused too much cognitive decline and she couldn’t keep working any more, or live alone. It’s not like it was a surprise. MS has a predictable progression. We’ve been lucky that she’s been able to work up till now. She’s still mobile without a wheelchair, but mentally it’s getting much more obvious. MS doesn’t change your IQ, it just destroys your executive function and language skills. Plus she’s also autistic, so that makes things even more challenging. When you talk to her she very clearly sits askew from the world. She has meltdowns fairly frequently. I’ve been interpreting the world for her since I was about eight.

I’m still dealing with some sadness that this will be my life now, but I have always known it was coming. 95% of the reason I bought this particular condo was that it was one level, with a lift, so she’d be able to physically manage getting around. Plus there are close neighbors, and a small, contained local shopping centre with a great library. (I didn’t grok that MS would take away her ability to read a book. Fuck MS.)

So yeah, this isn’t a surprise, but it’s just . . .  I had kind of bargained on still being employed when she needed to retire.

Real dollars and cents talk: My mortgage is NZD$1610 a month, which is bloody cheap for Auckland, much cheaper than rent. I am very lucky. My property tax is $6,000 a year, and my condo fees are $516 a month. Add in groceries for two, non-subsidized medications, and clothes, and I can’t support both of us on my savings for all that long.

So, solution: if I move out of Auckland I won’t have condo fees or a mortgage. On the down side I definitely will have less chance of getting a job — there’s little employment out of the main centers — but frankly I’m close to unemployable anyway. I’m an autistic non-gender-conforming  fat woman over 40 with an utterly impractical PhD. There are very few niches for me.

So on Monday 28 November I start leg one of my Find A New Home road trip. A four-day road trip along the Kapiti Coast,  from Otaki down to Pauatahanui. The northern point of the Kapiti Coast is still only 90 minutes away from Wellington Hospital, so it’s close enough to drive my mom to her hospital appointments.

Peka Peka beach. Photo by Aiden on Flickr, used under a Creative Commons Licence

I’m looking for a community where I think I could make a life. This process makes me really evaluate all the things that I think I “need” for contentment. I feel like I need a cafe where they know my name and I can get a good flat white and sit at a table for two hours and no-one will huff impatient sighs at me. But, you know, that’s not a need. Maybe I have to give that up. I think I need a library nearby. But I guess once a month I could drive to a library. It would make me finish my tbr pile.

I do need space. I need to be able to shut myself away from my mom and get some down time. Maybe I could look for a place with a yard big enough to build a tiny writing cabin with a desk and a day bed.

Sleepout by Skyline. I want the picnic table too.

But I do need internet. This one is not negotiable.

And you know what? I’ll finally be able to get another cat. I’m so ready for a cat.

At this point I’m planning for leg two to be the Wairarapa, and leg three will be Kaikoura, but these won’t be until next year.

I am so lucky to have these options. I am so lucky to have fluked my way into an unprecedented housing price rise. I get to cash out of the market now and live a good life in a safe, beautiful country, when I did nothing to deserve it. All I can do is try to pay it forward where I can. Maybe I need to find a place with a guest room for American friends to come for retreats, although I’m not sure that will do much to ease the pain you are feeling right now, or the future you are facing.

Two weeks until I leave. I’ll take my camera and laptop and keep y’all updated.

Well, shit

At this dark time, take what solace you can from this BBQ Inquiry podcast which asks, “Would Trump be a dangerous President?” and looks at the limits of presidential power.

Popcorn

I was researching for a completely different blog post and I found this 1972 video of electronica classic Popcorn. I’d blocked out how before the mid-90s cameras just used to blatantly go right for the tits. And ass. Also, I wish humans danced like this. I am dance-challenged, but I could do this penguin imitation.

 

Morgellons: My favorite non-delusional ‘delusional’ disease

This week’s Radiolab podcast – Alpha-Gal – is one of the best ever. You can get the gist (although without the divine storytelling of meat-worshipper Amy Pearl) from this New Yorker article by Peter Andrey Smith.

So it turns out that over the last couple of decades more and more people have been going to their doctor saying, “Hey, you know what’s weird? I’ve suddenly become allergic to red meat. I break out in hives.” To which doctors say, “What a load of bullshit. A) there’s no such thing as an allergy to red meat. And B) even if there was, humans don’t just suddenly develop an allergy after eating something for years. This is psychosomatic. It’s all in your head.”

Perfectly cooked steak, by Prayitno on Flickr, used under a Creative Commons Licence

Which for people like Amy Pearl, who had eaten and loved red meat for years before it ended up putting her in the emergency room in anaphylactic shock, was contrary to all empirical evidence.

Then in 2004 a new cancer drug, cetuximab, was released for use. While it fought the growth of colorectal cancer cells, in some patients cetuximab also caused allergic reactions: itching, swelling, a rash, and a dangerous drop in blood pressure. Just like the reactions of people who were finding they suddenly couldn’t eat red meat. And it turns out  these cancer patients had pre-existing antibodies for an enzyme called alpha-galatosidase – otherwise known as alpha-gal. Alpha-gal is found in the tissues of non-primate mammals. Cetuximab had been developed using genetically altered mice. Cetuximab contained alpha-gal.

So, question: why did some people have antibodies for alpha-gal? Answer: probably because they were bitten by a tick.

Lone-Star Tick. Photo by Benjamin Smith, used under a Creative COmmons Licence.

There’s no indisputable proof for this – yet – but the distribution of alpha-gal antibodies aligns neatly with the distribution of Rocky Mountain Spotted Fever: a virus carried by ticks, which, until the late 1940s, killed up 30% of victims.

And what do you know, 80% of people reporting red meat allergies also reported being bitten by a tick. In 2011, tick bites were linked with “a twenty-fold increase in alpha-gal antibodies, giving rise to their theory that the saliva of lone-star ticks sensitizes humans’ immune systems to alpha-gal, triggering the release of histamines when red meat is ingested.”

The New Yorker reports that disease ecologist Richard Ostfield says, “Given the diverse pharmacopeia found in tick saliva . . . it [is] not surprising that one compound might mimic the blood sugar found in its warm-blooded hosts—non-primates like deer, mice, and rabbits, which have alpha-gal in their blood. When tick saliva perforates human skin, some people’s immune systems treat the sugar as a foreign antigen, producing an extraordinary reaction to red meat.”

Right: so far, so good. Although there is no definitive proof, it’s looking likely that something in a tick bite primes humans to reject alpha-gal, which is bad news for both your cancer medication and your spare ribs with bourbon glaze. Although, you know, if those were human spare ribs, they’d be able to eat them no problem. Just sayin’.

Definitely not delicious human ribs. Photo by Kurman Communications on Flickr, used under a Creative Commons Licence.

 

While this is awful for people like me who find animals delicious, what had me really jumping up and down is the potential ramifications for investigations into Morgellons disease.

As the Wikipedia entry states, Morgellons is widely believed to be “a form of delusional parasitosis.” Believed by the medical establishment, that is. But not by the people who go to the doctor with “crawling sensations on and under the skin . . . itchy rashes, stinging sores, fiber-like filaments emerging from the sores, severe fatigue, concentrating difficulty, and memory loss.”

Many of these people turn up at their doctor’s surgery with a tiny collection of fibres they have pulled from their skin – fibres that are growing out of their skin. Too bad these people didn’t know about the “match box sign.” They didn’t know during medical training young doctors are specifically warned that one day people who imagine they are infected with bugs will turn up at their surgery carrying matchboxes full of “bugs” they have picked off their skin.

The match box sign is a clear signal the patient has a psychiatric illness, not a physical one. “Oh, I know this one,” thinks the doctor. And then tells their patient it’s self-induced. It’s psychosomatic. It’s all in their head. And can therefore be treated with antipsychotic medications. Oh, by the way, statistically, as a Morgellons sufferer, you’re a middle-aged white woman, and that will mean you’re totally taken seriously by doctors at the best of times, right?

Morgellons rash and fibres. Photo from the 2015 BMC Dermatology paper by Middleveen, Bandoski, Burke, Sapi, Filush, Wang, Franco, Mayne and Stricker linked to elsewhere in this post.

 

Nurse and Morgellons sufferer Cindy Casey Holman is kind of the spokesperson for Morgellons awareness. She points out although it was first described over 300 years ago, has taken decades for people presenting with Morgellons symptoms to be listened to. It took her nine years to find a dermatologist who didn’t immediately want to put her on antipsychotics.

The thing is, when medical practitioners do take people’s symptoms seriously, there’s something there. Morgellons sufferers test positive for Borrelia burgdorferi, the bacteria that causes Lyme disease. As you may know, Lyme disease really fucking sucks. Borrelia burgdorferi is introduced into the human system by . . . you know it: a tick bite.

And those fibres? When people actually tested them instead of whispering, “match box sign” under their breath and throwing a prescription for SSRIs at patients, they turn out  to be “composed of keratin and collagen, and . . .result from proliferation of keratinocytes and fibroblasts in epithelial tissue.” And these fibres can be found “underneath unbroken skin.” They’re not transfer from bedlinens, carpets, or clothing. They’re growing inside you.

Which makes it frustrating when these guys boldly state they treated four people for delusional parasitosis:

“We are presenting four new cases of delusions of parasitosis, two of which also had features of Morgellons disease. This illustrates the difficulties in therapy of these patients having almost universal refusal to accept the psychiatric component. Two of the patients responded to treatment while two did not . . . The recommended treatments of pimozide, lexapro, and risperdone are examined.”

Imagine you have one of the multitude of tick-bourne illnesses. You go to the doctor. They  give you an antipsychotic, an antidepressant, and medication used to treat schizophrenia. Utterly surprising no-one except the doctor, your condition fails to respond to this. And the doctor calls you delusional. Just like those people who developed an impossible, non-existent allergy to red meat.

You know, there’s already a freaky new disease being seriously targeted by professionals because it causes weird-ass skin growths: Bovine Digital Dermatitis. This causes “keratin filament formation in skin above the hooves in affected animals.” It is also mysterious. “The multifactorial etiology of digital dermatitis is not well understood, but spirochetes and other coinfecting microorganisms have been implicated in the pathogenesis of this veterinary illness.”

Cows, dude. We take this seriously in cows because BDD causes decreased milk production and weight loss in livestock.

BDD in a cow’s foot.

We don’t know enough about Morgellons. And part of that is because when women go to the doctor they are frequently not taken seriously. Yes, some people do present to their doctor with delusions of parasites crawling under their skin. This is a thing that happens. But Jesus fucking Christ, you cannot do a case study of one patient – repeat, ONE – and write an article declaring you have “prove[n] the self-introduction under the epidermis of environmental filaments [and] scientifically demonstrated the self-induced nature of Morgellons disease, thereby wiping out fanciful theories about its etiopathogenesis.”

So you should go listen to Alpha-Gal because Radiolab is one of the best podcasts around and this is one of their best episodes. And you should also be tick-aware as hell. Or, alternatively, become an exclusively indoor person. I vote for that last one.

 

Perseverance

This guy spent 20 minutes while I was at coffee this morning trying to break into the sugar. This is how I regularly feel at 1am. Spoiler alert: he made it.

 

New M. Caspian story, free online

My second free short story for the Goodreads BDSM group’s Kink in Ink story event is available to read here. This time it’s an M. Caspian story, with gun play, violence, and an HEA. You do have to be a member of the BDSM group to access, but you can request membership from the group homepage. If you don’t care to join I have plans to put this out on Kindle in December, as part of a volume of three short stories.

Grey Seal Pup by Kev Chapman on Fickr, used under a Creative Commons Licence

I’m planning to corrupt as-yet-unborn humans

When I moved in 2014 somehow I lost volume 3 of Totally Captivated. I like to think one of the movers opened it by accident, had a epiphany about the awesomeness of manwha with gay sex, and pocketed it. I understand. Education and self-discovery is always a good cause.

Volume 3 is pretty important to the character arcs: Jiho discovers his ex Ewon and his gangster boyfriend Mookyul are having dubiously-consensual sex, and we start to learn about Mookyul’s and Ewon’s tragic, angsty backstories. Then we get hurt/comfort, followed by semi-violent possessiveness. The volume is vital to the story as a whole.

So although I don’t know if I’ll ever read the series again, I finally got around to ordering a replacement copy this week. Because I’m planning to leave my curated paperback yaoi collection within arms reach of my entirely non-existent grandchildren.

Megan Harris showed me my first porn magazine when I was twelve. It was her father’s.

Mr. Harris kept bees. Sometimes, when I went to Megan’s place to play, he’d be harvesting honey. I watched with eyes like saucers as he scraped the wax off the combs. When he slid the frames into the extractor he’d let me turn the handle to spin them. Bees crawled lazily over the filled jars lined up on the stained rimu kitchen table. Tacky wax lingered on my fingers for days.

Looking at Mr. Harris’s magazine was like watching a car wreck. Everything was so red. And shiny. The men’s glistening cocks were swollen purple spears, mouthed at by women with frosted makeup and tired eyes.

It all looked painful.

I hadn’t known this is what I was supposed to be.

I went home and cried.

I wish I’d had someone to slip me a bootleg copy of Little Butterfly instead. Rich but neglected teenager Nakahara coaches his boyfriend Kojima to exam success so they can attend the same high school. The Omnibus is going on the lowest shelf.

On the shelf above will be Cool/Uncool. Takashi freaks out when his high school boyfriend Yukihisa starts to grow taller than him. Luckily he learns to deconstruct the misogynistic hegemony of culturally-constructed sexual dimorphism.

The Finder series will be on the top shelf. I’m a grown-ass adult and I’m still not sure I was ready for what happened to that roll of film in Target in the Viewfinder. Totally Captivated will be somewhere in-between, right next to U Don’t Know Me.

I’ll also leave bookmarks for MangaFox on my unsecured desktop. And for Tumblr. And AO3. When my descendents’ schoolmates show them hardcore gonzo porn (which is probably going to be when they’re about eight, god help them) I want my grandkids to know they have alternatives. With a plot. And gentle angst. And a lot of love. And no frosted makeup at all.

Hobonichi Safari (Olive) Review: Pockets! Pockets! Pockets!

I am deeply and irrevocably in love with my 2017 Hobonichi cover: the Safari (Olive) for the A5 Cousin.

A Hobonichi cover is my everyday carry. It’s what I use instead of a wallet, because it’s better than a wallet: it’s a wallet and a journal. I don’t need a bag – I can leave the house with just my journal cover. I don’t actually use it for my Hobonichi, but rather a blank A5 journal. Currently I’m in the Taroko Engima – 480 pages of 68 gsm dot-grid Tomoe River paper in a lie-flat binding. The cover also works for pretty much any A5 journal or sketchbook, like the medium Leuchtturm 1917, the Nanami Seven Seas Writer or Crossfield, or a Rhodia Webnotebook.

So, you may remember my gripe with the regular Hobonichi covers is that the pen loops are too big (hence why I lost my Copper Lamy AL-Star to the wheels of an SUV). Also, I wish it had some way of fastening apart from a separate elastic closure like the Rivet Band Laccio. I don’t like closing it with a pen through both loops the way Hobonichi suggest because I find that awkward. I actually hack the front pen loop off my covers because it pisses me off flapping about to no purpose.

And Lo! Hobonichi heard the anguish in my soul and provided the solution: the Safari.

It’s literally my perfect journal cover. My stationery soulmate.

The front card pockets and leather smile pocket hold all my bits of plastic for 21st century life: debit/credit cards, insurance, library, coffee, breakdown assistance etc. Behind the card pockets is a long  pocket I’m currently using for a couple of movie vouchers and a store credit note. I keep my quarterly, monthly & weekly plans slipped in beside the journal cover. My Hobonichi ruler hooks over the top of the cover, too.

In the back is a secretary pocket, for letters to post, prescriptions to fill, grocery lists etc.

Behind this are three more spacious card pockets which I use for sticky notes & adhesive strips. And behind those is another long pocket for cash, letters, itineraries, schedules, etc.

But that’s not all! On the outside of the front flap are another two medium-sized pockets.

THERE’S A PLACE FOR EVERYTHING! LOOKS AT ITS PERFECTION!

And it still has the large Hobonichi back pocket, ideal for receipts, letters, or a Hobonichi memo book, which slips inside perfectly.

This is not correct for color: it’s way too green. The other photos are pretty accurate.

As a public service I experimented with getting a Leuchturm softsover A5 Jottbook in there, but the pocket’s not quite big enough. Maybe it would stretch with time to give you more room, but I don’t want to stretch mine out. It holds my phone like a dream

That’s a Samsung Galaxy Grand in the pocket.

There’s one single pen loop, the perfect size for a Lamy, a Coletto, or my 3-color Frixion, or for two regular-sized pens. A sturdy gold dome fastens the whole thing.

My Enigma is fatter than a Hobonichi Cousin or a Seven Seas journal. It’s 30mm thick (just under 1 & 1/4 inches). My pockets are packed, and you can see this is about as thick as you’d want to go. If you watercolor in your journal and end up with a two-inch-thick bulging book, the Safari may not be the option for you.

The cover is made from a nylon twill which feels smooth and almost silky to touch, plus cleans up easy. The trim is leather. The bookmarks are kind of like . . . boot laces? Does that sound weird? They’re flat and plaited, with leather tips, and have a subtle glaze on them which has a slightly crispy hand.

There’s an A6 version too, in navy, which is cute as a button, but I don’t use an A6 journal, and it has insufficient delicious pockets. But, you know, it’s an option.

I slept with my Hobonichi cover the day we met. Go ahead and judge me. It’s true love, you guys. You can pry it from my frigid, decaying fingers. It makes my life better. I don’t care that it cost USD $93 before shipping. I seriously want to buy two more and hoard them like precious, precious gold for the inevitable moment when this one wears out. Want to apart from the, you know, having no job thing.

If you want a sturdy, practical, gorgeously-designed journal cover for an everyday carry, check out this one on the Hobonichi website while they’re still available.