Help Kickstart a Morgellons documentary

Remember my post about Morgellons and alpha-gal? Filmmaker Pi Ware is heading a team who just started raising funds on Kickstarter to produce a documentary on Morgellons. The participants look interesting: a mix of both “it’s a kind of Lyme disease” and “it’s psychological.”

Although film projects can be dodgy to back, apparently they’ve, “filmed 80% of our footage already . . . We just need this funding to get us to the editorial finish line.”

The Kickstarter campaign finishes 3 March. I hope they make it. I’m intrigued to see what they come up with.

An important lesson in defining goals

These are my blog metrics for the last week.

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The Omoshiroi memo block went viral, and at one point my blog post was the 2nd English language result on Google for people trying to buy one.

I got more visitors in 2 days than I did in all of 2015. Which translated into 0 book sales, 0 blog followers, and 0 email subs. Which is fine, of course. These are hits from people who are, like me, into divine stationery, but not, unlike me, into twisty and worrisome consent issues in gay porn.

But it does highlight the flaw in one of my 2018 goals, which was to hit 10,000 unique blog visitors.

Having a glut of blog visitors raises the question, “Why was this my goal?” XX visitors doesn’t relate to engagement, or readers, or people who want to swap pictures of yummy new inks.

Speaking of, I’m not the only person drooling over Takeda Jimuki Limited Edition Kyo No Oto Hisoku from Jet Pens, right?

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So, I’m discarding this goal. Here’s a better goal. My best ever writing month was January 2015, with 61,547 words. My goal is to beat this before 1 July 2018.

More words translates (roughly) into getting a new book out faster. Getting a new book out . . . ? It’s everything.

Now that’s a goal I can work toward.

*delighted screaming* Someone buy one of these!

See update at bottom of post for purchase info (Spoiler: it’s not good news) Updated: 18 Jan – you can preorder one!

 

 

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The Omoshiroi Block, from Japanese company Triad Inc, is a memo block, with an inbuilt pen holder, of 100 (non-sticky) pages. As you use each note you uncover a tiny sculpture, and the folded notes become a haunting, monochromatic landscape to surround it. They have other models, too, over on their beautiful Instagram, but this one, of Kiyomizu-dera in Kyoto, is everything.

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Apparently, these go for around US$50 to US$100, and so seriously, I will never have the budget to buy one, but I need some human I have at least a tenuous connection to, to own one and make my life complete. Forget the fact the notes are tiny. Write one word a day. It’ll be minimalistic poetry.

Update 15 Jan: WHERE TO BUY 

Basically, you can’t. There is no English language online retailer. The Triad-Inc server has crashed under the weight of traffic so I can’t ask them for purchase info.

Tokyu Hands in Umeda had some last week, but they are all gone. Kyoto Design House apparently had some as of the weekend 13/14 Jan, but they do not seem to have them listed on their website http://kyoto-dh.com/en/ If anyone has a contact to actually physically go to their store, let me know if they still have stock. (Update 2: Kyoto Design House posted on their Facebook they are sold out).

As far as I can tell, there are zero omoshiroi blocks left on the globe to buy. If I hear more I will update.

Update 18 Jan. Hat tip to Mike for letting us know Japan Trend Shop is accepting pre-orders for three styles of Omoshiroi block: Kiyomizudera Temple ( the one photographed above), Asakusa Temple, and Tokyo Tower, for USD$119 with $20 shipping, and stock expected Feb 1. Like Mike, I have no experience with Japan Trend Shop. If you’ve dealt with them before and found them to be a stand-up company – or not – share the info.

 

Meet my new toy

Stuck to the cupboard above my desk is a lump of Blu-Tack. Not because I want to adhere things to my wall, but because I use it like a fidget cube to distract my hands when I’m thinking. It’s kind of messy, it gets stuck under my nails sometimes, and if I drop it I have to throw it away, because tbh I don’t vacuum that often. But these disadvantages are far outweighed by how relaxing it is to pull and squish it.

But Blu-Tack no more! I found Crazy Aaron’s Magical Thinking Putty.

It’s a viscous silicone-based non-Newtonian fluid, which flows very slowly (but not as slowly as pitch), so for all practical purposes, it’s a rubbery, gel-like solid when you play with it. Just like Blu-Tack.

This stuff is totally old hat in the US, so Americans are saying “Jeez, duh!” and rolling their eyes at me here, but it’s only just hit popularity in NZ. If you’re a Kiwi, until Jan 31 MightyApe has some colors on sale in the mini-tins for only $3 (Whitcoulls stock it too). And for thinking purposes, a mini-tin is a perfectly cromulent amount. It fits in my everyday carry so I can get it out when I’m puzzling out a plot point. It senses as tacky to the fingers, but it doesn’t leave your skin sticky at all (magic!). Pro tip: don’t leave it sitting on the open page of a notebook while you take a bathroom break because it will sluggishly but inevitably drool all over the shop and it is not easy to pick off paper.

I got Super Scarab because it’s iridescent purple/teal and I am six years old. I put it right up there with Brain.FM as a key productivity tool. Possibly not coincidentally, I just had my most productive two weeks of writing since August 2016. For any aspies out there who like slightly sticky, rubbery textures, and have not yet tried putty as an executive-function-enhancing tool, give it a go.

 

 

 

Etsy artists screw up Thoreau

My daughter is about to go to the UK, in what would have been called her OE if she were going for longer, or was younger, but is probably now more accurately an extended holiday. Although, she’s chucking in her job when she leaves, and she has no plans for what she’s going to do when she returns. She hasn’t found her ikigai yet. It’s okay. I hadn’t either at her age. I want to let her know it’s okay to be floundering. That she doesn’t have to measure her life against the people around her. So I tried to buy her a keepsake quoting Thoreau, to take with her on her travels. Problem: on Etsy they all look like this:

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Well, this is just utterly wrong.

The original quote, from Thoreau’s Walden, is

“. . . if one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with a success unexpected in common hours.”

There is a huge fucking difference between “Live the life you have imagined” and “Endeavor to live the life you have imagined.”

Endeavor, man.

It’s about trying. Struggling, striving, laboring. It’s about exertion and slog. Doing the hard yards. Yakka. About getting up day after day and just bloody giving it a go, and failing, but getting up the day after that, and doing it all over again anyway.

And you might never get there. “Success unexpected” doesn’t mean you get everything you set out to achieve. Contrary to the beliefs espoused on reality talent shows, wanting it with your whole heart still doesn’t mean it will happen.

I definitely have a life I imagine. I earn enough from my fiction writing to pay all my bills, stash away some savings, look after my family, travel to a writing con or retreat every couple of years, and I can buy an espresso or a book each week without considering the cost.

I am not living this life.

But I am endeavoring to live this life. I am doing what I can to achieve it, one sunrise at a time, one sentence at a time. It’s fine if I don’t ever get there. I won’t have failed, because I will have spent my time on the journey. And maybe what I imagine will change in another 10 years anyway.

Whereas if I was judging myself through the evidence I was indeed “living the life I had imagined,” well, I’m a huge disappointment to myself.

Embrace the endeavor, talented Etsy makers.

 

 

Depression Strikes Back

Depression has been kicking my ass for the last eight weeks.

A major contributing factor is my doctor reduced my meds. I was pretty shocked. I’ve been on them since 2001, and there’d been no discussion about this being a possibility. I asked why. She replied, “Well, you’re not as fat anymore.”

Since I lost my job in 2016, I lost weight. Partly because I can’t afford snack food, but mostly because I’m not commuting three hours a day, leaving the house at 5.45am, mainlining caramel lattes all day to keep me going, and falling exhausted onto my couch at 8pm with barely the will to inhale a pizza before I collapse into bed (spoiler: I still inhaled the pizza. The whole pizza).

For clarification, my doctor didn’t mean a weight/dosage thing. No, according to my doctor, because I’m not as fat now, I don’t have reason to be as depressed.

The consultation was the day before I moved. I didn’t have the spoons to argue with her, or express how outraged I was she assumes depressed people are depressed because they’re fat. I figured I’d give it a go. Although, I stopped my meds back in 2015? 2014? and things went very, very badly.

Sure enough, things have not gone well this time either. I started a reduced dose in early November, and spent the rest of 2017 slowly spiraling down into the delightful & familiar state where I only want to lie in bed all day, without even the strength to try to sleep.

The other contributing factor has been the reality of how much worse my mom is – and how much worse she is getting – between her brain tumor and her MS.

I feel guilty at leaving my grandmother in Auckland. And I feel pissed off at my cousins and aunt for implying through their shocked silence I’m a neglectful granddaughter and should have moved her down here to a facility close to me. You’re supposed to know the limits to your own capacity, though, right? And dealing with my mom now is going to be all I can manage.

I struggle with the knee-jerk reaction that because my mom can’t go out without me, I shouldn’t go out without her. It seems utterly unfair. How can I expect her to watch me happily heading off to experience the outside world, when she cannot?

Because of this, I screwed up.

I signed up to a beginners yoga class starting last week because I wanted to make new friends in this city. But then I felt like a piece of shit because I was going to get to go and meet humans and move my body. And I crumbled under the guilt and screwed up and asked if she wanted to go with me. And she eagerly jumped at the suggestion.

This was a terrible idea because she can’t do yoga. She can’t remember a sequence of instructions, she has terrible body-awareness, and she can’t walk unaided. I felt overwhelmed at the thought of trying to manage her environment for her – to manage her –  so she could participate.

But rather than address these issues with her, instead, when the class came around I said I felt sick, and I bailed on something I’d been looking forward to going to.

I know it sucks for my mom, to be trapped without being able to drive, to have language recede from her grasp like a racing ebb tide, to find the world more bewildering each day. But do I have to be trapped by MS, because she is?

It’s like a plane crash, right? Look after yourself, before you look after anyone else. Put my own oxygen mask on first. And if I look after myself first – which means acknowledging I have the right to have a life outside this house – then I will have more energy to look after her.

I need to sit down and work out three things a week my mom and I can do together. Like, a simple exercise class, a visit to a gallery or small township, and a movie. That seems pretty good. And reasonable. And when NZ life kicks back into normality in February there will be MS Society activities she can join, to which I will drive her.

I’m trying to remind myself I cannot be everything for my mom, even when I am trying as hard as I can. That I’m not wrong or selfish for wanting to create my own activities outside of her life.

I’m also rereading The Art of Taking Action: Lessons from Japanese Psychology.

This book helps me. Gregg Krech shares the concept of arugamama. Right now I feel depressed and sad, and I accept that. I don’t wish I felt otherwise. I do not try to escape my experience of feeling depressed and sad. I adopt a state of non-resistance. I feel how I feel, but continue to devote myself to what it is important to me to do: my life’s purpose. I invite depression to accompany me as I write.

Action isn’t something that will come after getting over my depression. Action is a way of getting over my depression.

So, I’m depressed. And I’m practicing non-resistance. And I’m writing. And trying to get un-enmeshed from my mom. And most importantly, I’m going back on my full dose of meds.