Greenstorm's Journal

Mon, 27 May 2024 16:38:47 GMT

Now that I'm home, and still on leave from work, I am finally able to sort some of the stuff out I'd intended to get to originally. My capacity is tiny, which is to say I have a couple to a few hours of movement/doing things if they're interspersed with resting per day, one phone call every second day or so whether it's practical/medical or for social, eating several times a day but minimal food-making, and that's mostly it?

So I managed to arrange for someone to pick up the pigs tomorrow, I'm keeping Baby and Hooligan back because they're old and friends. I unloaded the truck, which took 2 days and a furniture dolly (boxes of clay are roughly 40-50lbs and I just couldn't lift them the first couple days). I went in to my specialists appointment and they eventually gave me a bed to lie down on since I couldn't sit as long as I needed to without my head supported.

In February I'd ordered chicks with a friend and we got the reminder email last week, but I somehow thought they were coming next Sunday. Well, yesterday-Sunday she messaged me to ask where at the airport to pick them up. So yesterday I cleaned out the bottom chicken coop (6 wheelbarrows of light bedding) so I can move the silkies over into it so I can put the chicks to brood in the quail house. The quail house bedding is moister, so heavier, and I need to move everyone over at night when they're sleeping, so it'll be a couple days. Meanwhile the babies are brooding downstairs in a giant rubbermaid tub brooder on the sofa. Little Bear is interested but there's lots else going on.

When your memory sucks every day is a surprise.

I also had a talk with my supervisor, who-- you know, I think I need a lot more words to say "it's still bad and I don't get to see my doctor till after the leave is over because Healthcare so I can't really plan at this point"

A friend brought me by soup and bread. Another friend helped me out financially. I feel safe, and I feel like I shouldn't feel safe.

I haven't had capacity to do pottery yet. That's hard. Because I can do only one or two things a day I need to have food lined up and no animal/work/medical stuff, but because I can only do one or two things a day most days contain something I need to do, I can't get it all out of the way to clear my schedule.

My housesitter killed about half my tomato plants by number, and more than that by variety %. I still have maybe 16 flats of peppers and tomatoes, and I started a bunch of squash and leafy greens and re-started some of my precious northern cantaloupe seeds. I'm getting to the point where some of these I don't have backup seeds for, either because they're an F1 or a rare unobtainable variety or whatever. That isn't to say I can't get other seeds and start them next year - it's too late now to start more tomatoes or peppers -- but it's a loss. Turns out the plants started dying after a week and instead of messaging me to ask what to do the housesitter decided to wait till I came back to explain. Who knew what could have been saved in that time?

She also, like every human to enter my house without intimate knowledge and care for me, threw out the "rotten" tomatoes in a bowl on the counter -- my seed tomatoes that the parent plant is now dead, so that line's done -- and I'm pretty sure fed one of my prosciuttos ("moldy cheese") to the pigs to get them in the pen when they got out, and despite very very very careful instructions to take only the meat from the downstairs bedroom freezer (which had frozen and thawed) to lure the pigs in used the gorgeous salmon Josh brought me from the freezer in the carport instead.

A ton of things in my house are unique, irreplaceable, and don't make a lot of sense to people without exposure to the concepts behind them. When people visit and try to be well-meaning (and don't have unique homes of their own) generally irreplaceable or hundreds of dollars worth of stuff gets destroyed. Other people's houses are frequently inexplicable to me but I don't think I destroy stuff like that? I've finally got mom trained, pretty much, and Tucker and Josh understand. But it's frustrating and I think it's yet another reason I wish I had more space-- space to entertain separate from the living space which contains what I do with my time everyday.

Anyhow, that aside we've had good rain on and off, more than we've had in awhile. I'm hardening off my tomatoes. Something on my back deck eats lettuce but all the leafy greens other than lettuce I planted out there before I left are doing well. I have a silkie - looks like a giant white cottonball -- who can somehow hide effectively in an empty field. Little Bear had his first shots, is microchipped, and will shortly be fixed and I have a vet. Every time Little Bear goes to the vet they exclaim "he's such a delightful cat" so who knows what happens back there.

I need to get the wherewithal together to till my garden but we still have some lows in the forecast, even though the actual temps have been turning out very high. With the loss of so many tomatoes I started a sweet corn grex. My southmost garden is now fully planted, more or less, and waits only for a path and little greenhouse. It's woody perennials, needs underplanting with herbacious, but still. Has lots of haskap, hardy cherry, ribes, elderberry, etc and lots of blossoms this year.

Some apple seedlings from last year survived -- I knew my winter would kill some, since those seeds are from california -- and I'd like to catalogue them when I have wherewithal. I sorted through my seeds and put away anything I'm definitely not growing this year (missed the favas window, pulled out individual squash seeds, chose my corn path, put away the tomatoes and peppers, etc) so I only have a single dairy crate of seeds left out that I'll be putting in. The year is shaping up.

Every night Little Bear stalks me up to bed and settles in with me and Whiskey.

Solly has been sleeping in the muddy stream to keep cool, and here I thought she was just getting out.

The goose nests were eaten by the pigs when I was gone, but there might be a couple they missed.

The ambient temperature here varies between 10-27C indoors and 4-25Coutdoors (barring a little frost here and there) and is comfortable open window weather. Somehow n Vancouver a much smaller range was sticky and both too warm and too cold.

I'm not strong enough right now to unscrew the hard-water-encrusted thingers under the sink tap so I may need to hire the job out, annoying when I know exactly what I need to do but less annoying than not having running water in the bathroom sink.

I'm slowly sorting through "what if rest doesn't increase my capacity, it just maintains it, and I'm like this now". So: instead of telling a friend I can go for a walk with them, I would probably invite them over? So: I need to plan my systems much better and more efficiently. So: I need a cart so I'm not using the same wheelbarrow for chicken manure and bringing groceries in from the truck?

Threshold loves me. I love being here. All that, good and bad, and things are ok.

The psychologist I was referred to asked twice if I had things I enjoyed, hobbies, etc. Of course they want to steer me towards depression. The first time I just said yes. The second time I said "Yes, tons of stuff, the best is my tomato breeding program where I'm finally into the F2, so after 3 years of work I get to see the results finally, to see it opening out into a whole bunch of possibility-- and of course we're starting the little pottery studio in town, and there's a garden club" and I think he finally believed me. But it's hard for people to believe, I think.

If you're disabled you're supposed to be dissatisfied, unhappy. If you cure the unhappiness you're supposed to cure the disease, too, especially in "women". I have pain sometimes and a weird lack of function other times, enough that apparently I'm setting my jaw hard to get myself through things and have worn through the disc on both sides, which is what's causing the ear pain? But I'm happy. It's very possible to be in pain and also to be happy. And it's obviously possible to not do everything you want to do and still be happy, because in this near-infinite world how could anyone ever be happy otherwise?

Loving my life, and living in a life I love, has always been my most radical and least-understood act. Even when it's hard and it hurts and it's lonely. Even when it's not safe because of course it's never safe. Even when, even when.

I've been sitting up typing for 40 minutes now. The rain has restarted outside. I need to lie back down. Two cats are sleeping on the foot of the bed. Sometime later I'll go out and clear out another third of the bedding in the quail shed, or maybe do some pottery, or maybe do a run into town for more chick starter. I'll not chain multiple activities together, I'm learning that. And things will, for now, be ok.

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Mon, 29 Apr 2024 07:27:01 GMT

Two days of pottery classes learning teapots and after both days I come home and crash hard. I sleep and sleep and sleep and it's a challenge to get myself up the stairs or sometimes hold my phone, let alone lift anything heavier.

This is supposed to estrange me from my body. I'm supposed to be angry, frustrated with it, to stop believing it's an ally.

In dog training they say that behaviour is communication. My body is an ally. Together we experience joy and pleasure, this weekend and pretty much all days, in greater or lesser quantity. It supports me in taking care of it. When I consider there to be a need it bends its boundaries and allows them to be repaid later.

My society is not an ally. It proscribes the joy I'm supposed to be able to feel, reduces pleasure to a scarce commodity traded for a bucket list of abled activities. Like my body, my society has communicated with me through behaviour: when I have a need it will deny it and leave me without.

I've always been estranged from society. I have no interest in being estranged from my body. Human right or immense privilege, if food or shelter is withheld from me because of my body's capabilities that's not my body's fault. It's my society's. Likewise if joy is supposed to be accessed only through certain body abilities that's an external imposition. I've always had more things I'd like to do than I could reasonably do, both through number and ability. While this doesn't mean I have no loss or grief around some of them that is nothing new n my experience of life.

And so I stagger home to bed, fall asleep, wake up, type with my fingers burning, call the cat over to snuggle, and head back to sleep.

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Ooof

Tue, 09 Apr 2024 16:51:56 GMT

( A poem written on running headfirst into systematic, self-protecting mental health stigma at work. CW Sui )

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Mon, 08 Apr 2024 16:54:44 GMT

Maybe it's that I don't find any other part of the natural/physical world less wondrous than the eclipse?

Do folks have a limited amount of awe etc, so they can only associate it with things they encounter infrequently?

Something about people finding natural events set-apart from their lives?

The world hands us these things every second.

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A safe container

Tue, 13 Feb 2024 17:19:01 GMT

Thoughts don't come easy on this new medication. It gives me access to physical energy/ability to do things, but that energy is drawn from the same pool I'd use to think, and it doesn't make the pool any bigger. The more I draw on the physical pool, the worse the cognitive pool gets. It's also striking how clean the lines are on what my mind can do and what it can't do when I look at cognitive tests. I'm so curious about it and I'd like to know more.

(think of that last paragraph like a 5 mile run where I pause and just sit, doing the mental equivalent of panting, and decide that's enough on that subject because there are other things I want to write about).

Today I was once again thinking about how PTSD and autism are linked in our society. More specifically, how perception of actual reality is discouraged-- how people with sensory differences are taught from very young that their senses are lying to them. Sunlight, or heat, or cold, or sitting in a chair, or low noise-- those aren't really painful, don't be silly. Twirling, or standing on your toes, or doing proprioceptive activities, those can't possibly be stabilizing, they're distracting, don't be silly.

So it's hard to learn, not just what pain or pleasure or stability feel like, but also what reality is. It's hard to interact with the actual world because we can't share those experiences, we need to keep them secret.

(another pause for cognitive breath, while I give up on where that train of thought was going)

It's beautiful here today. Good crisp below zero, bright sun bouncing off the snow, if you had a south-facing rock you could nap in front of it while the thermometer read -15C and it wouldn't be cold.

I started a ton of pepper seeds on the weekend. Last year I'd tried really hard not to start too many seedlings, so when the garden club started up and started selling seedlings I didn't have any extra. The year before I was going to be moving to the Island so I didn't start much. This year I can go back to starting lots of seedlings and Corrie said she can sell them at the farmer's market, I guess people snap up anything that looks like a seedling no matter what in the spring. So: peppers started. Tomatoes will be started roughly beginning of March. Squash will be started roughly mid-end April, along with cucumbers. Not sure if I should do lettuce etc?

I definitely need to set up my big shelf for seedlings. Right now things are being started, waiting for dividing in a flat, under my one light. Looking forward to this.

Meanwhile my body hasn't been able to do pottery much, and Tucker was here last week, so that's been slowly humming in the background. TS Eliot is always on my mind. At some point my skill may be enough to capture some of this.

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Advocacy

Thu, 01 Feb 2024 19:03:02 GMT

Whoah being at home is regulating, and having been in the office is energizing (after the fact, and after regulating).

Scent pumps were installed in all the bathrooms at work a bit ago, which I mostly could ignore by not going in, or not going in for full days. But when they were like, "hey, you need to either come in more or make it official that you're not" it became un-ignorable. My supervisor got it disabled but then followed up with some more information.

Apparently the curvy trap under the toilets freezes in this cold weather and sewer gas comes up into the bathrooms, which "results in the need for odor eliminator spray". The bathrooms have zero ventilation except a grille on the door, and I've suggested some easy options for them previously (get one of those arm-things that holds the door open or closed since the provided wedges don't stick to the floor and the door slides closed).

Their solution was that I'd just use the bathroom in the other part of the building, the one I need a keycard to access, since that one didn't freeze and they could remove the scent pump. I wrote back and respectfully suggested a ventilation option might be better, especially in light of worksafe bc (basically osha) recommendations around scent in workplaces which are things like "don't wear perfumes and scented products and advise people of the toxicity rating of any scented things that are used by the workplace". My supervisor seemed receptive, but we'll see.

I also ended up finally finding the hidden neurodiversity community at work, they're buried within the group of folks working on accommodations so you need to join that, then know to ask to be added to the neurodiversity channel. I suggested that information be more widely disseminated, likewise the disability channel hidden in the same group.

Then, through that group I received a webinar link for public servants on creating a better space for neurodivergent folks, which I disseminated to my boss ("you'd asked for anything I had on improving emotional intelligence, this might give some tools") and the safety memo which will go out to the whole office ("we're all so different, and sometimes working with coworkers can be frustrating. Grab a coffee and join in this morning webinar to learn a little and hopefully defuse some of that stress before starting your workday!")

So anyhow. That's a couple hours of work, and many more hours of emotional work-juice, before I even start my "real work" for the day. Plus side: we've written this sort of thing into my employee development plan so it will support me in my year end evaluation. Minus side: I think I'm out of work energy for the week.

Still, yesterday I was super frustrated when I learned I'd only be able to use the far bathroom, and the day before that I flounced home because I'd had to use the bathroom too many times and it made me sick (I explained to my boss that I lost, not only the workday, but the evening outside of work and so I was feeling pretty emotional about it, and that was upsetting too). Today I feel a little more heard and like I've done something useful. And I still have the neuroweird channel!

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Cognitive Slowing/No flowers for Algernon

Wed, 31 Jan 2024 19:42:21 GMT

Whip-smart, sharp, a little mean
Always ready with a come-back
Always willing to dive into new ideas and
Argue.

It's what we valued-
What we value. A performance
Of quick wit
Between one thing
And the next
Never losing audience
Attention
Never asking more
Than they can
Give
Solidifying their approval
Before their
Next appointment
Or text message.
Satisfied
They were worthy of our
Attention
We approve
And move on
To a quick vacation
In one country
A new this or that
Enough novelty
To fill
A bucket
List.

What if it took months to communicate an idea?
What if it took years to learn a place, what if we spent so long learning slow ideas
That each one had time to crease itself
On our faces and our hands, written markings of the lifetime
Of integration of single thought into an ecosystem
Of other deep thoughts?

What if we sought, not the fastest, but the slowest,
Not the flashiest, but the deepest,
Our thoughts poised in composed contemplation
Absorbing each nuance of what exists
Before sliding one toe and then another slowly
Into the bottomless pool of accumulated knowledge
Celebrating when we integrated with the slightest of ripples instead of the biggest splash?
What if, what if, what if we all moved gently,
What if we watched before we moved, humble in our abilities, leaned on the value of others' thoughts,
What if, what if, what if we sat by the fire in slow contemplation
Laid out a constellation of what ifs
Against a whole sky's worth of context
Before weaving our actions into the tapestry.

What if, what if, what if, what if, what if, our minds weren't slipping into tragedy but into wholeness. What if, after racing over the surface, we allowed us to finally rest and slip below the surface into the embrace of--

What if, what if, what if, what if,
But there are no awards, you can't measure slowness, can't value unfilled space, can't even wait until the end of a short novel or a long slow poem without answers

With respect to https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(24)00013-0/fulltext#: edited to fix link

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Fri, 19 Jan 2024 17:07:55 GMT

Ohmygosh, just talked with my supervisor and I'm going to get the accommodation of an available standing desk (which I'm not supposed to be allowed) and being able to work from the couch at work when I need to, which is what I requested (it really is sitting in a chair for 8 hours that kills me). He suggested there's now precedent for full-time working from home except for meetings/fieldwork if we need to rework that. This feels... ok? Like I'm being cared about.

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Well, that was embarassing

Fri, 19 Jan 2024 16:41:00 GMT

New med is managing to more or less keep me awake through the workday, but it wears off and the end is a struggle. Even more because I was requested to go in Wednesday and while there were good and necessary networking bits I'm not sure my body is able to sit up in a desk for 8 hours straight anymore. Anyhow, I was extra tired yesterday, so I made it to a couple minutes before logoff time.

I thought I signed out, but apparently I didn't. I immediately fell asleep anyhow, and woke up an hour later to many texts and an email chain (the ringer on my phone is habitually off) about how I had missed my check-out for the day, they were supposed to call the police but they knew I didn't want that, so they'd had some folks call around and found a co-worker who could come and do a wellness check on me. That's the point where I woke up, responded, and the thing was called off.

So, um, that was embarrassing. It was also somewhat reassuring, in that they tried pretty hard to avoid the letter of the procedure (calling the police) because they knew I took issue with that. The "call the police" thing is direction from On High, supposedly based on direction from the provincial work safety body.

Luckily its unlikely that the police will kill someone on a wellness check in this context because we don't really hire that kind of minority. Folks know what's good for them, I guess?

In a normal forestry office I'd buy everyone who worked on not calling the police a beer, but we're across two offices and I don't even know how that would happen. One of the more frustrating parts of my particular brand of autism is being too alien to accurately communicate my positive emotions to neurotypical-ish folks. Or anyone, really. I'm a "leave a present on the porch, ring the doorbell, and run away" type.

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Needs

Tue, 12 Dec 2023 16:54:02 GMT

I really appreciate the perspective that ethical animal training literature has brought me with regards to "bad behaviours". When Solly is sharking or Bear is wanting to practice the cat death-bite on my wrist I can see this as trying to fulfill a need for play, much as eating fulfills a need for food. This isn't an animal "acting out", it's an animal who knows what they need and who is communicating that need.

It's also probably one of the more common examples in these articles, but now that I'm not afraid of a dog's growl I am so glad for the communication: it's a request for space. It isn't a symbol of a vendetta or a threat, though I guess for many people being asked for space can be considered a threat. It's just very clear communication of a desire. My cats and myself both are very capable of understanding these communications and responding in a respectful way and in all cases the dogs are relieved and grateful. The dogs trust me so if I need to invade their space momentarily to fix things they actually welcome it, like when I need to pick up a piece of meat Thea is chewing on and put it in her doghouse for her so she doesn't have to protect it from all sides, or when I help Avallu into the safety of the house when there's a stranger he doesn't like.

Solly has had the growl trained out of her a little -- this is typical when folks punish a dog for growling instead of giving them the space or security they are asking for -- and it makes it challenging for the cats to figure her out. I'm starting to train her back into it a little. It's remarkable how similar the whole thing feels to, for instance, a human who's been told what they want isn't ok learning to advocate for themselves, and of course "don't use aversive methods" is starting to be a cause in the autistic community, where there's advocacy around how we treat children.

This post brought to you by my sweetest Avallu and by the teenaged Bear-kitten.

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Marginal

Tue, 14 Nov 2023 17:24:24 GMT

Okay. Some of this might be edging into language now.

I've written a lot about how I generally have been able to surround myself with people who liked or could tolerate me even when I present more as my actual self. I have ways of flagging, innoculating, etc so that happens. It happens best in situations where there are lots of people to choose from, so folks who aren't into being around me can select away.

Moving up here was at first not a problem because I selected into a workplace with people who were compatible. When that company went under I landed at one of only a very few places in town I could work in my field. While I thoroughly screened my direct co-worker and he's an excellent fit the rest of the workplace is not. Additionally the professional society is... extremely not, and both hit my PDA pretty hard. Note for later that the professional society is required in order to do forestry in BC.

Meanwhile there are plenty of people who I think are similar to me up here but I haven't figured out how to form community with them. Most of them are women, supported by a spouse, whose free time is during the day. Most of them have lots on the go.

And then the pottery studio started up and there were a couple folks with dayjobs who were also really interested in doing things. I was hopeful. It was and is a chaotic startup. As it falls out, though, the people with power in the situation are people who seem uninterested in actually doing pottery. One of those people at least is someone with whom I'm an anti-communicator, which is to say we completely misunderstand and badly interpret what each says completely every time (for instance, pretty sure when I tried to say I was happy to help get things off the ground she thought I was saying I was burnt out and reassured me by saying I was only supposed to come in a couple times a year, then when I pointed out the misunderstanding she said she went by what people said and not by the fluffy things they meant). The other is frequently on vacation and overwhelmed, though I think she and I are slowly learning to communicate.

And these people, for whom pottery is on par with going to see an occasional theatre event or going on a little vacation, seem like they'd like to populate the studio with other similar people: folks who make five or six things a year, who come and talk about their grandkids, who are a little uncomfortable with glazing but aren't really into learning about it. So when I come in and I want to learn about glazes and am happy to do research into them and put together a collection of synergistic recipes that don't need a huge variety of ingredients and a shopping list, or when I want to try and make sure people's work is finished before their access to the studio ends, or when I practice on the wheel a lot to reach a skill goal (which I still haven't done) they... don't know what to do with that, are suspicious of it, and functionally or systematically reject it.

That level of enthusiasm, of doing things more than on a surface casual level, is of course a deep part of my personality. So now the place I was hoping to connect with folks, to form community, where I could go and spend time and casually socialize without the demand of hosting an event... that wants to spit me out. I get along great with the attendees, it's the people running it that are the problem.

And to add just a little sting, the pottery studio is part of a nonprofit and they charge a membership fee "to make sure it isn't just a group of friends doing it for themselves" but actually serves the community. But. I'm not the community, I guess. I never really am.

So what I'm feeling is a lot of alienation, but not the cheerful kind I felt previously where I recognise that I'm different and accept that there's lots of diversity among people and I just need to sort myself into the right places. Instead it's feeling more personal.

And I think a lot of that is because my support system is kind of slipping away, and also because my PDA is overwhelmed.

But, more about that later. I think I've done well to get this far. It all feels very intense and uncomfortable and I feel somewhat helpless in the face of it. If I thought I could live in the states I'd run away to stay with my pottery mentor for awhile; she's encouraging, she appreciates that quality in me that drives me to learn things, and she's one of the old guard geek bipolypagan folks so I feel culturally at home with her.

I guess it says something that my escapist fantasy used to be running away to do canopy science where no one knew me, back when I was in a big group of people who I got along with, and now it's to run away to someone who knows and accepts me now that's what's lacking.

This is a post about impostor syndrome, neurodiversity, and power.

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Wed, 08 Nov 2023 21:58:10 GMT

Douglas Adams wrote about a race that communicated by biting each other.

So often I live in words. Right now I live in shapes.

How do you communicate by handing someone a mug shaped to their hand?

I'm grateful that work is driving to the forest and measuring trees right now. It's suited to how my mind is shaped.

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Generative A(ctual) I(ntelligence)

Wed, 09 Aug 2023 19:54:01 GMT

Honestly a lot of my autistic masking seems to function like AI, where it takes likely things instead of factual things and makes a reasonable narrative from it. I also have a translator state, where I soften my actual self, but that takes a lot of brainpower. Saying the expected or reasonable thing, even if it's not factual, can happen easily when I'm caught completely unprepared.

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Making the stigma external

Fri, 04 Aug 2023 18:29:05 GMT

My whole life I've had to either make meaning and take value from how I'm different, or hate myself. Luckily my PDA largely rejects society's demand to only be one way so I've missed a lot of the internalized loathing a lot of people have. I've had a couple bouts with it, of course, but the lever of "if I'm happy, who dares tell me I shouldn't be?" has been a strong one.

Most of that work was done in regards to polyamory ("if you really loved me you wouldn't--" was the stuff I had to reject), what I now know was PDA and autism ("to be happy you should--" and "your emotions should look like--"), PMDD ("you should respond emotionally consistently to situations"). Gender stuff honestly flew mostly over my head though I'm still working on trusting femme-type people to give clear consent/non-consent in sexual and romantic situations.

In all of that it's basically come down to believing I have a right to exist the way I am, and that as long as I'm not harming folks by doing so that's really, genuinely ok so any societal pressure, internalized or channeled through humans or human systems, is just fundamentally misguided. It's not necessarily malevolent, it's just... not correct.

Folks have differing opinions on whether autism is a disability. I'm leaving that discussion for right now.. I was going to say that PMDD is "arguably" a disability, but I think that's just because I've successfully dealt with the stigma internally-- something which significantly limits the things our society expects you to be able to do. In the case of PMDD it was recurring, and though I could manage it through planning it did limit things like when I could work, when I could do relationships, sometimes when I could drive, etc. It "felt normal" because I was good at managing it, but it was limiting.

And here's where my internalized stigma comes in. There's a stereotype of disabled people as being unhappy because of their disability or else having to work really really hard to overcome the disability, that is to do the things anyhow, if they want to be happy. I basically haven't been thinking of myself as being disabled, because I enjoy my life. There's also the background concept of relapsing/remitting not being a "real" disability.

So now it's been several months that, as I've said, my capacity is significantly lowered. This doesn't mean I can't do things. It means I can do less of the things I'm used to, and less "active" and "thinking" stuff. It's easy to think of this as doing "more nothing" but I've always rejected that paradigm. There are the same 24 hours in a day. The time still exists, and a narrator could still describe my activities during those times. The activities may just be different, things like lying in a hammock feeling the weight of my body, the softness of a blanket, and listening to birds or resting on the sofa with my head and legs propped up and being sat on by a cat while petting him intermittently. Those aren't "nothing" unless I discount my life's value during those times, and I'm not about to start discounting my life's value now.

So let's say my capacity is altered. Either way I objectively spend all this time lying down, hours and hours a week more. Kind of even hours a day more. This is what stereotypical disability looks like, lying in bed. And that clashes with my internalized idea that to be disabled means I can't do things I want and that I can't be happy.

I am, most certainly, still happy. Some days I chafe at not being able to do as much but not as often as I expected. I do slow pieces of things. I prioritize. Not everything gets done but it's normal for not everything to get done in my life: that's why I make activity menus instead of todo lists. I skim off the things I want to do in the moment and do them, the things that are most important for my self to enjoy later on and do those, and the days are still full and pass like jewels on a necklace. The soft feeling of my cat is a much different experience from digging a garden bed but it's just as much a gift of sensation given to my body. Breathing, particularly, has been uncomfortable but it's layered with these other types of comfort: of watching the light move day after day, season after season, across the walls of my home. Of watching my tomato hand-crosses swell. Of having creatures that light up because they love so much that I exist.

And I most certainly objectively fit some sort of definition of disabled, at this point. 13-16 hours in bed a day seems a requirement, I can carve it out of one day or two days, but then I need to make it up. If I make it up promptly I don't suffer and I find things to enjoy. If I push it off too long it gets into significant discomfort, from being tired to being dizzy and disoriented to having intense headaches and body stuff to, eventually, my body just not moving sometimes when I try to make it move.

I can feel internalized ableism telling me I should suffer. I should be unhappy because of these limitations. I should just stop doing things because I can't do some things, or as many things. Particularly my day paddling with my co-worker and then doing a day of fieldwork, those feel like if I want to consider myself disabled that I should not do any of those things. I did those things. I'm learning: I bought pre-made food for meals, I fed the animals twice as much so I could go straight to bed the next day, I skipped changing the sheets and showering one of those days, I didn't even go near the garden so I wouldn't get drawn into it and away from resting.

And it was fine. I juggled my priorities, as I've been doing all my life, I took lots of rest, and I'm fine.

Disability doesn't feel like an identity to me. It feels like a description of the mismatch between the society's expectations of me and the way I exist within the world. It's not on me but is instead on society's limited ability to understand and support my self, and the selves of other people I know. It's like, I don't know, someone starving while standing next to a field of camas or potatoes: the issue isn't the plants, it's the people who don't know how to appreciate the plants.

There are so so so many strings from this set of thoughts to how I think about autism and also interpersonal stuff generally, but I'll leave this here for now.

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Thu, 27 Jul 2023 04:45:36 GMT

Give me this day my daily round
Of time measured in field and raindrop,
Of garden and greetings of bright-eyed companions of fur and feather.

Forgive the way my heart is swallowed up by the land
Separated from all you would have me be
Brightened and deepened beyond your ken

As you will one day forgive the land for swallowing my body.

And lead me not into the mire of your expectations
Correct clothing, correct language, correct tone, every muscle correct
I will never be correct. I can only fail. And so

Deliver me from your judgement, turn away if need be
Watch your clocks, make your rounds
With your own kind.

For thine is the society
And the power
In this brief interlude
Until we are dust.

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Playing with the other kids

Wed, 26 Jul 2023 16:09:36 GMT

So let me be clear: since I was about six I haven't been great at playing with the other kids. Or at least, playing "normally". I understand that its common now to diagnose autism early and use negative reinforcement to make kids play "normally" which, thank goodness, was not a thing in my day (nor do I think mom would have stood for it). But if we think of play as testing capabilities and venturing into the not-quite-known, exploring rules and exceptions-- I don't do that in the same way as other people. I'll play with physical properties a little, in clay or soap or whatever, or small iterative things like climbing the same wall a bunch of times in a row. But I don't hurl myself into an exploration or how far I can go before falling or having my body fail me suddenly. The closest I get to that is seeing how many buckets I can carry in a row.

Solly is, um, the equivalent of a neurotypical kid in this regard? She wants to play. She wants to run and bump into things and trip and run more and jump and sometimes fall in the service of testing her limits. She wants the glory of stretching her muscles in new and exciting ways in service of games with half-manifested rules. And I suck at this kind of play, especially now when it's honestly a bit of a challenge to stand up long enough.

She loves being snuggled and petted, and I can do that. But then she also wants to play, and I'm not sure how to do that. I read a training blog that described a particular dog as "paws everywhere and deeply social" and that's my Solstice pup alright. Since Thea started playing chase and now wrestling with her she's a lot happier, but she also wants to play with me, and I'm not sure what to do. I'm old and boring even for humans, let alone this smart, athletic pup. Poetry or wordplay don't cut it with her.

It's funny because I recognise it from the way I have sex, that pattern, I guess I have the same "ok, doing the serious thing, but now let's play" in that circumstance. I can see the sort of comfort in interaction building, and then wanting to launch into exploration. Not useful here.

So we're both definitely still on the learning curve for this one. I'm looking forward to seeing where we end up.

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Respite

Tue, 18 Jul 2023 15:25:54 GMT

Yesterday was cool with almost no smoke. I was able to open the windows and little breezes played through the house. It was lovely, especially since I was cleaning house for Tucker's arrival. I even washed all the squished mosquitoes off the bedroom and bathroom walls! It's been long enough since I was a housecleaner that I begin to forget how much difference those little things make to the feel of a place: cupboard fronts (which I did not wash), walls, light switch plates, baseboards. It makes a house look newer and lighter.

I'd got these tiny tiny pouches from the grocery store trash run that said "add to 1L of water, let dissolve, and spray" and they were a bathroom cleaner. They worked surprisingly well, and even more surprisingly the scent didn't bother me. I guess the format is meant to reduce the number of spray bottles and weight of water that gets shipped around. I have a couple more to drop into cleaning buckets of hot water (not how it's meant to be used, I know) for big wall-cleaning days. I continue to be grateful for my vacmop.

Today the smoke is creeping back. I'm in the office to figure out what's going on with this summer: my fieldwork is a no-go, since more than half the road-accessible area of the district is under evac alerts or orders for fires and at least a couple of the blocks I was going to sample are probably on fire. Between the smoke and the alerts fieldwork is probably counterindicated.

This morning I put on my "neurodiversity is beautiful" shirt and wore it to work. Previously I've worn autism-coded symbols but not anything with the word. I figure I may be dizzy, tired, and disoriented but that's the best time to pull off representation - when I'm too occupied by living to overthink it.

Wish me luck on scooping some good work out of the pile today. Contracts all summer will destroy me. I can't even put correct names on itineraries lately.

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Shadow

Wed, 14 Jun 2023 20:11:30 GMT

One of my skills is that I don't show pain. That's going to be ridiculous to anyone who reads this, I think, because a lot of pain spills out here. But my first instinct is always to smile, make my body move like normal, do the normal things, and just continue.

I seem to remember studies where emotional and physical pain light up the same regions of the brain. I'd believe it. A lot of emotional pain is pretty normal for me, for various reasons. Physical pain... is harder to know about. It's much easier to hide from myself than emotional pain is. Dissociation and displacement motions are second nature to me. I seem to interpret physical pain much lower on the intensity scale than emotional pain, which makes a certain amount of sense: my PDA experience means that the near-death sort of fight-or-flight is triggered super often, and very little physical pain matches that level of immediacy. Sure, maybe I can't think or move right, but I don't feel like I'll immediately die.

Yesterday I went into work and sat in my normal work chair, like I do a couple times a week, and my hip just lost it. From the top of my right hip through my pelvis and down my leg and into my ankle I felt burning/itching. Not searing, but hot and tight and awful. As I went through the day, got off work, went grocery shopping, and eventually came home and collapsed after chores I was trying to think: how would you rate this pain on a scale of 1-10? That's what they always ask, right?

8, because I literally cannot think of anything else.
4, because I can more or less still walk and drive short distances with I think enough attention not to run into things.
4, because I can control any involuntary sounds of pain in public.
9, because it significantly limits daily activities like driving, thinking, eating
5, because it's not an immediate threat to life but I'm not sure I could take more than a week of it continuously

I don't know. I took a couple hours off work this morning and just rested it and slept and it's pretty ok today, but it got me thinking about the whole thing.

Plus Tucker is going to see his girlfriend in the states this weekend, and that is likely to create a more immediate pain. A lot more food for thought.

It's easier to talk about physical pain, and folks are more receptive to both listening and to figuring out ways to help. Emotional pain-- those dynamics are harder, especially for me. The only people who can really understand are other PDAers, I think. Everyone else has been telling me all my life that so many experiences can't really feel like pain to me, or that if they do I'm just a bad human. I guess it's not surprising that my relationship to it is so fraught.

I just want to sit at the pottery wheel and get into my body. I want to be able to go up and plant things without feeling sick and weird in the sun. I'd like to come in after that and be held and have someone make dinner for me.

It's interesting, I think I messed up my brain meds a couple days ago. I am pretty sure I took a double dose, then missed a dose a couple days later (I couldn't remember if I'd taken it or not). So this pain seeps back in. Or maybe it's about Tucker, I don't know.

Either way yesterday was hard and today is hard.

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Poem-a-day catchup

Sun, 04 Jun 2023 00:34:28 GMT

#53 F3

It’s just us two here:
Me, and the whole wide world.
Humans didn’t stay,
One of us was too big for them.
Last year I ripped up flowers
Bending the tiniest part of the world to my will
Cradled my offspring under lights all winter.
The ravens watch over me
And take their share in exchange
A reminder that flesh always tears
In the end.

I am the meaning-maker,
My stories stitched together to support
The weight of my demanding mind
My life bigger than the compass of my memory
Glutted with years of joy
And honed by solitude.
I always watched across the room
Watched you,
Watched myself,
Told stories as kindly as I wished they’d be told about me.

In the beginning I named myself
And like any good spell the name remained
While the world burned the rest away.
In the beginning I named myself
And like any good self I remained
While the world burned away.

When the story is complicated there’s an ending close behind
No one can abide uncertainty
At least I can’t, and the wide world isn’t talking.
The flowers I ripped up last year are growing.
It’s just us two here.
Humans didn’t stay.

#54 Global warming as a failure of relationship 3

Humans once said they yearned
For the nature they actually spurned
They judged it by looks
And wrote lots of books
Any wonder the atmosphere burned?

#55

There's something about that last glimmer of light,
Sky some sort of deep aquamarine and bright enough
To show up the wind-tossed aspens as they hiss against it.
You don't understand, it may have been light this late,
Until an hour before midnight,
In the city too. But if it was
There were too many streetlights
And it never made a difference.

The sky is glimmering. The aspens are hissing. The fan tosses white noise and breeze into my warm attic-shaped room. Summer is beginning, and I am home.

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Poem-a-day catchup

Mon, 15 May 2023 16:21:03 GMT

Been posting to fb, haven't got over here for awhile. Busy in the garden, busy writing poems. Obvs posting more than one per day.
( Poems 17 through 25 )

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The medical system

Tue, 02 May 2023 16:37:54 GMT

A week ago I had an appointment with my PDA counselor. The idea was to sort through my symptoms, medication, figure out what was resolved and what wasn't, what I should pursue and what I shouldn't, what my next steps were, etc. The whole thing is honestly pretty overwhelming.

So we spent the hour on that, and during that hour she mentioned that autistic folks are super prone to autoimmune conditions. I knew this. We're hugely gender diverse and, er, ability-diverse? Hypermobility, fibromyalgia, etc. I was talking about my skin symptoms that I'd had for so many years, and about the tiredness, at various times. She mentioned MCAS. Now, I'd looked at MCAS way back and hadn't really thought much about it. I was on allergy pills for my skin stuff for a long time, though, and maybe that was correlated with better physical welll-being?

It's an easy one to test for, though. Take allergy pills. There are two kinds of histamine blockers and over the counter allergy pills are one class. Those mostly deal with skin, airway, etc. There's a second class that I think needs a prescription and it deals with GI stuff. I have both sets of symptoms so--

I bought allergy pills and started taking them a week ago.

My tunnel vision/eye stuff is functionally gone. My memory is much closer to normal. My mind doesn't feel like a frozen ten-ton molasses blob I'm trying to roll uphill. I feel energetic in the mornings.

I still get super tired and need naps, and I'm still a little slow off the mark, but I've been going outside and doing things. My heart still pounds kind of erratically (like one out of fifteen times I walk up the stairs to my bedroom, or one out of seven times I carry the feed buckets) and my muscles feel slow/achy, but I don't feel like I'm hauling dead meat around.

This is basically amazing.

Now I'm thinking, what if the H2 histamine blockers remove my GI stuff? I've had that forever, it's mild enough that it's inconvenient but I never starve, but I remember waking up to stomach pain most days in high school even. That endoscopy I had last year wasn't conclusive. Low-level nausea is pretty common for me. I also don't know what level of discomfort normal people have, folks talk about things like indigestion all the time. So I've been accepting all this stuff as just normal, but what if it could go away?

They say as you get older things hurt more. A lot of this stuff has always been like car noise in a city: background, the brain usually cancels it out, no point in complaining, everyone deals with it and it feels like an inevitability. I don't class "normal stuff" as pain because what's the point? But what if, as I get older, I could have days without pain? Regularly? And not just without acute pain, but without the background stuff?

Either way it's amazing to be able to focus my eyes fully again, to be able to think my way through a sentence without having to reread it as I go because I've forgotten the beginning. I'm very curious about how the allergy pill impacts my brain function. I'd heard something about mild anaphylaxis, narrowing air passages or something, from MCAS. I can't find it now. Could that have been what's going on? Something else acting directly on my brain? I'm so curious.

Edit to add: I spoke too soon, it doesn't seem to be fully better but it does ebb and flow and it's less intense for sure

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I don't have nightmares but sometimes they're over anyhow

Mon, 24 Apr 2023 17:21:56 GMT

I've been dreaming hard the last couple weeks. These are the long, complex, deeply social dreams I used to have when I was younger; days or months or a lifetime passes and I have enmeshment and intimacy with people. Some of those people exist in real life. Sometimes upon waking I find that they never did and that's pretty devastating because my feelings of care and connection remain.

I also haven't been writing much about non-garden things. Whatever is going on with me has made it difficult. To describe it I will conceptualize writing as having four components: having an idea to write about, being able to form concepts into words, actually doing the push to start (executive function?), and the physical labour of viewing a screen and navigating a keyboard and web interface. Right now I can do the first two but not the two. Bits of things to say float around in my head but I can't sit down and dig into them.

Normally writing feels companionable, clarifying, and positively connecting. I'm putting myself out into the world as myself (this is a practice for me that requires constant, er, practice, which is why this journal is public). Anticipating that connective feeling usually drives me to write in the same way that anticipation of a conversation with a friend might drive you to use your phone. There's usually not a barrier to me for starting. Lately I'm unable to anticipate or conceptualize that feeling in advance so I'm not able to start easily.

Furthermore my body is tired all the time, my elbow had been hurting, and there is still something weird with my vision. I quite often sit or lie there thinking of exactly what to say but the physical experience of writing feels overwhelmingly uncomfortable to me. I have an optometrist appointment this week so we'll see if there's an obvious cause for the vision; if not I'll follow up with my doctor because it has been awhile with this blurry spot in my left eye, with difficulty focusing, and with a patchy/bleeding overlay on light surfaces. Luckily basketweaving seems to have fixed my elbow. I probably just needed to work the unused accessory muscles hard.

Having said that it would be good to find a good speech to text device.

On the opposite end of that I've been doing an evolution deep dive and every once in awhile there's a Stephen Hawking quote. I cannot tell you how soothing it is to hear an AAC (augmentive/alternative communication) device being used. Part of my autism learning has been exposure to folks with situational mutism, that is, folks who sometimes lose the ability to speak but other times are fine with speaking. I get those periods, and I get periods where I can force myself to speak but it's really really uncomfortable. Having just one person in my awareness who uses AAC sets me at ease on an unexplainably deep level, like maybe someday I can do that too when I need it.

I've been pretty busy lately. I'm still very very tired a lot but I've been able to spend a couple hours at a time outdoors somedays. I took two day-long basketweaving workshops and learned to make willow baskets (!!) which felt really joyous and fun. The first one was on Friday, my Friday off, and was a small class full of delightful people including the person who runs my local food bank. It was a nice chat-and-work day. The second class was on Sunday, it had more people and was a lot quieter but I still found so much joy in making the basket. Not quiet pleasure, but actual joy, like a leaping of the heart.

I seem to be able to connect to the things in front of me right now. I may not be connecting well to the internet but every time I see my baby apple trees and tomatoes I'm happy. Those baskets and my pottery feel good. A seed exchange with the food bank person was lovely and I like her generally. It remains such a relief to experience joy and connection again after a winter without.

Some things are more complicated. The pottery studio in town seems to be turning from a "show up sometimes to volunteer" to "carefully navigate people to find out information and push a little but maybe ultimately be a structural/organizing force myself". I'll do that if need be but I'm a little bemused. I've been able to dodge the garden club and landrace gardening organization; I've been good at organizing long enough to know that the second I take anything on I'll be running the whole thing. It may be that if I want the studio to stay open I need to step in, though.

That's always how they getcha. This might be a record timetable for being sucked in though.

Also complicated is stuff with Tucker. With the exception of that one evening (which is scarring from years of society and probably relationships using "your partner feels hurt in this situation" and "you shouldn't be poly because it's bad" and which I totally understand) he's been really present and loving and available. Realizing that I have no obligation to interact with him, I am wondering if I'd like to explore how our interactions could be if 1) he's not in a job where he's super burnt out and 2) I have my mind and sense of enjoyment back. Both those things are true now and they might not have been true for a very long time. I guess we'll see how things go and I'll self-monitor.

Meanwhile counseling today will involve a deep dive into my symptoms that might be medication side-effects (this counselor has lots of experience with autistic folks on various medications, we tend to react differently), some way to track symptoms and make decisions about trade-offs, and hopefully a strategy to approach my doctors and an approach to deciding what do to next. I'm feeling woozy a lot but happy, and I think I need to clear up the woozy before I'm driving 4 hours a day dodging logging trucks on resource roads. If I were in the city it would be fine, but with this much driving it is not.

More random things: donated a bunch of seeds to the burgeoning local garden club for them to give away as prizes, that may count as having given 120 or so packets of seed away locally. Big win.

Food bank can take both eggs and inspected frozen pork. Come to think of it, I wonder if the local teaching kitchen would mind hosting a bacon workshop? That might let me get out from under some pork belly. Contributing to the food bank is a win-win-win; I get to support the part of my community I most want to support, I don't have to run a perishable food retail business (though maybe I can tax write-off a sufficiently big donation?), and folks get food.

Cats are eating 1/2 can a day of wet food mixed with 1/2 can of water each. Their energy levels and coat quality have noticeably increased.

I guess volunteering with the pottery studio is volunteering? I've been looking for something to volunteer with for years here but it's mostly only during working hours. For instance the health and wellness fair that has all the clubs and volunteer folks put out a booth and people from town can go look is Tuesday afternoon, with just a touch of after work time.

I ordered a new, bigger collar for Avallu. He'll let me brush his right feather but not his left so I'm glad I'm working on it a little at a time. He's really enjoying this routine brushing, as am I. He's getting extra snuggly. Now if only I could maintain a routine.

Did I mention I have like 275 apple seedlings growing? Extraordinary. I feel so lucky.

I've been listening to a podcast called "Evolution Talk" lately. I was initially skeptical about 10-15 minute episodes written in an easy-to-digest style since I normally like very fact-based deep dives. The guy comes from a radio play background too, and has voice actors for folks like Charles Darwin. I've found over time though that it's a delight: short enough episodes that I can usually keep my attention through one without having to turn it off and rest, and he's a very clear but comprehensive thinker. He also does a bunch of series on a topic and he really digs into subjects like popularly-unknown folks who worked on pieces of the idea of evolution, multiple theories and how they're supported, etc. He also has his sources on his website which is becoming a requirement for me to take something onboard.

It's been raining and snowing and raining and sleeting. My towels are out on the line and have been for a couple days. On the other hand it's supposed to be 25C next weekend? This is a very springy spring.

Anyhow, very long update but I'm still in here. I'm just less physically and emotionally able to internet than before.

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Made for babies

Wed, 19 Apr 2023 15:43:36 GMT

My family is made to make babies. Birth control that's close to 100% will be somewhat less reliable for us; our hip structure tends to lead to easy pregnancies, easy births, and lots of kids. I know mom had really heavy periods, and I did for a long time. My cycle was always blessedly regular and came with obvious communication from my body. It only started to wobble by a couple days in the the last several years.

So with the PMDD thing I went on birth control pills. I started them about 100 days ago.

I bled for the first 40 days or so. That backed off for a couple weeks, then I had a very light period for a normal amount of time, 4-5 days. I stopped bleeding. Now I'm bleeding again, lightly, and I seem to have had some of the accompanying emotional stuff right before the bleed started.

So I'm still cycling even though I'm on pills specifically designed to stop that. I don't even know if this is supposed to be possible? On birth control pills one "normally" goes off them to cause a pseudo-period every month (there aren't the same hormonal and ovulation things going on, so I think medically it's not the same thing, but it does get rid of the accumulated endometrial lining). Lots of people take them back to back to prevent periods and medically it seems there's little evidence to suggest that's a problem. I know some people can spot/bleed lightly kind of continuously on the pill, but I don't know if that's normally in a cycle pattern.

It's notable that, like endometriosis, one of the things older-school doctors prescribe for PMDD if they acknowledge it exists is "get pregnant, that will give you nine months where it doesn't bother you".

Meanwhile on the lower dose of sertraline I'm obviously back to being able to enjoy my hobbies but I'm having progressively longer bouts of dissociation of various kinds. I'm also still ultra tired and some of the weird stuff around heartbeat, dizziness etc that I got occasionally will hang around for several hours in the morning. Vision is also still weird. So I'm still way, way better than I was without it but still just super not functional.

It's definitely possible that this is autistic burnout (a lot of these are pretty classic symptoms) and that the sertraline is erasing most of the hormonal stuff and letting me keep powering through, which just makes the burnout worse and clearer.

But anyhow, this is mostly an administrative note about renewed bleeding.

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Tue, 28 Mar 2023 05:08:06 GMT

PDA: because goodness knows the world needs something to balance the people who go along at all costs.

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Sun, 26 Mar 2023 02:29:45 GMT

Today I was human basically all day. I did my landrace gardening talk for seedy saturday. I was pretty worried about it be because my memory is awful, but I managed to get through it only glancing at the paper a couple times in the twenty minutes, and people seemed pretty interested. Then I dished up seeds for folks and it was pretty great to know my seeds are spreading to a bunch of people in town, including a bunch of people on my road (lots of new neighbours!).

I stayed after and chatted with gardeners, then went and did my grocery store animal pick up and chatted, then called my mom back and talked to her for awhile.

So much human!

Now it's evening and I'm trying to sort out food, there's some goose borscht on the stove, and singing some more. I have accepted that singing is one of my good stims, and I'm on the fence about trying to learn to do it "better" (more supported, with less chance of damaging vocal cords) if I'm doing to do it a bunch.

In potentially related news I went down one increment on the sertraline and feel... not necessarily less tired, but less evenly tired. But also maybe less calm.

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