Category: worry vs. clarity

Musings on the changing nature of (social) media

Woke up thinking about how different Mastodon feels (even now as its culture has shifted a bit from what I was seeing a year ago) compared to other social media.

Other, generally shareholder-value-focused, services hold you in not only through natural human desire to avoid hassle, but through intentional design. The walls of the walled garden ideally look nice, but they will be raised if people start to wander.

Here we can the landscape around us & inviting other places we might be.

When we can see where we are & compare it to other places / ways of doing, we are subtly reminded to consider “Is this how I like it best? Is there a better way of doing this? How might I want my ‘this’ to change? Should I change my current ‘this’ or move to a different ‘this’?”

Open networks invite the questions:
“How can this provide more fully for individual people here?”
“How can we learn from each other?”
“How can we assist each other in making our days better?”

This gentle, constant slope toward “better for people” (rather than “better for extractable financial profit”) which is makes me deeply excited about Mastodon and the Fediverse as a force for human good, for Earthly good.

I know from living it that gently, consistently asking “How could this be more awesome?”—the perpetual upgrade of Discardia—is life-changing, and has the capacity to be world-changing.

I know the little changes add up, and the more of them we make, the happier we get.

This thinking is happening against a backdrop of watching Twitter get so much worse, but seeing people I admire still pouring out their creativity into that broken vessel.

I’m watching CNN shifting from its flawed but functional shape to another clickbait site, with weak or non-existent journalistic decision-making. Breathless articles that ask no hard questions. Sensational headlines. It worries me because CNN wormed its way onto TVs in public spaces as “neutral” but it grows ever less so.

It feels as if rather than trying to get viewers who wouldn’t have watched Fox News or read conspiracy websites to do that, are having their normal interfaces turn into propaganda and radicalization channels. That if they (we) just sit there and do nothing, they’ll (we’ll) start to see a different, scarier, world than they used to. That their growing fear / sense of being wronged will prime them for authoritarianism.

So how do we work against that?

How do we help shift people away from media that grows increasingly harmful to them & the world?

We make that not be the place where the best stuff is happening.

Make that not be the place where much of any good stuff is happening.

Stop posting on Twitter.
If you’re financially dependent somehow or otherwise constrained & can’t stop, then post there later. Put up your content on Mastodon & your own website first. Then link to it from Twitter.

#PrioritizeMastodonContent

How do we help shift people away from shoddy journalism & authoritarian-empowering news sites?

Ask the obvious questions the journalists didn’t ask. Ask journalists why they didn’t ask those questions. Put the pressure on for the media to do better.

Link to good articles with smart questions & praise them for it.

If sharing shoddy articles, contextualize the shoddiness in the first post, not with just snark but with the big unasked question. Ideally link to a better article.

Wield their past, better journalistic performance against papers & websites & journalists. Call them on slipping standards:
“I’m frustrated why you aren’t bringing the kind of rigor you brought to your articles in the past to this latest work. Why didn’t you ask X? You say Y, but that’s from their press release, & other sources say that isn’t true. I know you can do better; it’s why I started reading you.”

Point out when things are getting worse. Don’t let bad ‘new normal’s go unnoticed.

Memory and Privacy

I was strongly influenced by Justin Hall when I first started my blog in 1998 and used a very personal voice. Still do, obvs, as I talk to a reader which might be a person I know, one I don’t, my future self, or unfortunately increasingly these days a scrapebot for AIs or spam trying to steal a human skin for itself.

But I calibrated myself by one of the very most personally exposed humans on the Web, and that led me, in my crowd of personal sharers, to think of myself as holding a fair amount back. But when compare myself to the average person, even the average blogger, I shared a lot. (Faith No More plays in the back of my head and morphs to “we share a LOT”.) Particularly once I started retroblogging to fill in my pre-1998 past; writing an autobiography in slow motion.

Since I’m not the person I was then, and the Web and the world are not what we hoped they’d become, not all that stuff needs to stay out in public. It can fade like spoken words. Yes, yes, the Wayback Machine, but when you use that you understand that you are looking at a snapshot in time. That’s apparently not true of people reading blog posts even ones with the year (years ago) in big type on the page, judging by some of the comments I’ve gotten. So I gently fold and put away the oldest things, packing my public life away into a closed chest of memories.

Today I travel in time to be with my beloved grandparents, such a big little girl at six years old. Sitting with my dear grandfather, from whom I think I may have learned my sly sense of humor and what bits of urbane panache I have. I know it must be very hot weather, not only because the children’s amusement park we’re in is in Fresno in August, but because I am wearing a sleeveless short dress and sandals, instead of my characteristic childhood turtleneck, jeans, and sneakers.

The Flickr comments from my mother and her cousin on the pictures of little Dinah running, with hair in two ponytails, exploring the fanciful park, are personal reminiscences as parents, but they mention the golden (plastic) key you could turn to get a story by each exhibit. I kept that amazing, magical key in its pink cardboard box for years and years. At some point I think I gave it to someone with similar fond memories of the place.

I do not remember this place in particular, but I remember my feelings about the key. And I remember those few magical places where a kid could just run around without a grownup trying to stay within 30 feet of you all the time. I remember the grownups sitting in the shade and the bubbling bursting excitement of running and playing and imagining, and the sound of child voices and sandals on cement.

That memory and post fold away into the trunk and I lift up an image of my grandmother, mother’s mother and partner of that grandfather who with his Clark Gable looks gave her an exit door from her lovely but intense family. Mennonite to Methodist, evidence that for all her kindly people-pleasing she had a strong will to get some of what she needed. Present Dinah grieves that it was not enough at the very end; she was sad and missing something, but didn’t go for it in the way she had in the mid-1930s when she went off with that mechanic from across the street. Here she is in this picture, holding little me in her lap, hair wet from a bath with nude cousin (cropped from picture) also post bath beside.

Grandma is younger than my memory of her. Hair dark, face no more wrinkled than mine now. No gray like me now. And I do the math. She’s two years younger in this picture than I am now. Grandmother to a couple six year olds. We were lovely and I’m glad to exist, but I’m glad not to have grandchildren of my own, or the child or children they’d require. She was a busy person, I think still working then, office work if I remember rightly. There’s a great picture somewhere of her with a big coffee thermos heading off to work in pants and a cardigan sweater. I think it must have encouraged me in my pants-loving that I had a grandma who wore pants and did vigorous things (sawing firewood, camping, hiking).

In this picture I’m wearing a long sleeved, long flannel robe in royal purple with white lace at collar and around the yoke portion of the top. My cousin (only hands in shot) is despite wet hair, as ever, warm enough and comfortable in her skin. From the hands you can see that despite only two months difference between us, I am smaller, more delicately built. One might have predicted with my slim fingers, button nose, and long ears (an inheritance from grandpa) that I would grow up to look quite elven, but I stayed short and over time have become rounder. More hobbit in aesthetic and preferences than elf.

We are enjoying in this picture an activity that little children and grandparents still do: looking at pictures and having them described to us. But there’s no iPad here; this is a metal contraption with one side of white plastic (cracked at the top, it was a little delicate) with ridges in it to hold slides. Behind the plastic is a light bulb to illuminate the tiny images in the slides.

The picture is in the kitchen I remember from childhood, though I do not remember the artwork, a corner of which can be seen behind grandma’s head. The table is covered with a sturdy tablecloth in a large pattern of red and white check. We had that for years and I vaguely think I inherited for a while. Don’t remember what became of it, but it was sturdy indeed. I will watch for it in more recent pictures.

I fold that away, and then pick up something much more loaded. A picture of a poem written by my biodad when my parents split. When I wrote the post I titled it “the best gift ever”, but its emotional content has become more complicated over the last five years. In the free verse poem my biological father says “And so I said to Dinah: It’s OK to like [my stepfather] as much as me”. Which was a great gift.

The rest of the poem reinforces that message that no one has to be the bad guy, but also that he’s not without flaws. For decades I focused on the first part and it served me well in making the endings of my relationships much kinder and less traumatic than they would otherwise have been. And for that it’s still a great gift.

After he died (indirectly at his own hands through the effects of untreated alcoholism, which I have no memory or evidence of affecting me in childhood or even most of my adult years), I revisited this and got some new perspective. Along with the gift were some burdens; the expectation laid on a six year old to be fine with all this. All the adults involved were young and I was a verbally mature little kid, but I was not an adult.

As I appended to the post in 2018: “setting the expectation a six-year-old would handle the whole situation with calm maturity was rather a heavy load to lay on a kid. It created a mix of useful skills—not getting worked up or rocking the boat when it wasn’t going to change anything, being able to keep authority figures happy, along with the lessons mentioned above—and the foundation for some things that had less positive impacts later, when my acting above my age had become so good that sometimes the adults around forgot the maturity with which I expressed myself didn’t reflect actual experience. That tendency to align myself toward the adults leaves me suspecting I missed out on some great bonding with my peers, especially in my teen years.”

Part of the reason I play so much as a grownup is to let that little kid part of me just be a kid.

The end of the poem is directed at my mother and stepfather and handing over the responsibility of teaching me to them. “The responsibility is yours now”. He stepped away from parenthood in some ways, though he remained involved and gave lots of financial support which allowed me to go to a great, independent, frankly a bit hippie, private school on six acres of land. But there was, for my entire childhood, this poem pinned up in the hallway with art and photos, a reminder to be cool with this, to be cool with him stepping away from active parenthood. Plus among the things he mentions to teach me about are “about feelings that come & go, about fantastic summer snow, & the winter in my soul.” So, an explicit acknowledgement of his depression. Which is like, great for understanding family history but a hell of a thing to lay on a six year old. But what did he know? It’s was the early 1970s and he wasn’t even 30 yet.

I’m glad we kept this, though maybe it didn’t need to stay pinned in the hallway? I’m glad I kept it after my folks moved out of that house almost a quarter century ago. It gives me a puzzle piece which, when fitted with the writings I cleaned up from his house after his death, creates a clearer picture of a guy I didn’t understand very well. And that picture releases me from thinking there was something either of us could have done differently in our relationship with each other (other than him getting into treatment for that terrible intertwined problem of depression and alcoholism). But he was always careful to shield me from that problem and in that and his enthusiasm for me and my projects throughout my life, I see his love for me.

Holding the love, acknowledging the flaws, I gently and lovingly fold this memory up and pack it away.

The end of that year and photos of Christmas. My cousin and I, she looking a year or two older than I after her growth spurt, standing in long dresses in front of a magnificent tree. Always fantastic trees in the house I grew up in and the house to which my parents—my mother and stepfather—retired, and for that magic I have a huge burst of gratitude. Entrancing and absorbing throughout childhood and comforting each year now. A lot of work to set up and clean up those trees and though I know it brought and brings them delight, I appreciate the part of it that was making magic for me and for the rest of the family who would gather for the holidays.

My cousin and I have long straight hair, hippie girls, with rough bangs cut across to keep it out of our mouths and mostly out of our eyes. I’m holding a package, about to deliver it to someone’s lap. This may be the year that our elf duties began. How soon the aspects of that duty of sorting and timing became part of the job, I’m not sure, but it was an annual task I enjoyed greatly in those years of many many packages. I would, at least in later years, figure out how many packages there were for each person and then space things out so no one was stuck having opened all of theirs and just watching the others. (We opened one at a time in my family, so Christmas morning often stretched into the afternoon. You could open your stocking as soon as you woke up; such early wakings for an otherwise late sleeping child! Then once all the grownups had breakfast and coffee and gathered in the living room, you would at last come to the presents. Some years there were so many and so much exclaiming and passing around of things that we would have to take a lunch break before finishing off the pile. A fine festivity.)

In the second picture my cousin and I sit on the ground, surrounded by wrapping paper, each holding up a wee pair of binoculars and peering around the room with them. I am looking up at a seashell hanging on the lower branches of the tree. Less fragile or less precious items hung down there in range of the backs and wagging tails of our two dogs. I don’t see them on this tree, but it wouldn’t be many years before someone, probably my clever mother, hit on the idea of little bells there.

With the memory of the smell of pine, and the anticipation of bells, I fold away the magic of Christmas morning. Memories pack away and I open the even better gift of the present moment.

Decision-making as an immunosuppressed person during a pandemic

When the pandemic began we knew very little. We didn’t know how dangerous any given thing was; if, for example, touching shared surfaces was more of a risk than shared airspace.

It was safe to assume that immunosuppression created more risk of negative outcomes if I became infected with the virus—severe symptoms, hospitalization, death—and possibly also created more risk of infection if exposed.

In that situation, my logical choice was lockdown. Go out as little as possible, and wearing a mask when I did so (even before they were required), follow the hand washing rules rigorously, and wash or disinfect items coming into the house which may have been coughed or sneezed on at some point. Make a pod with only two other people, who were very careful about masks and hand washing and physical distance with those outside our pod.

Soon there was scientific data on the virus’ survival on surfaces which added isolation as an option to washing/disinfecting incoming items and I was able to set up boxes by the front door to allow things to sit for three days.

At various points as time went by new information came in—”yes, it’s transmitted through the air, and everyone should mask”, “yes, immunosuppressed people have substantially worse outcomes so really really avoid getting it”, “actually surfaces are only a short-term risk so you can just isolate for 8-24 hours and wash your hands after to feel particularly safe”, “N95 masks really really help, so get good ones and learn how to fit them properly”, “well, actually surfaces are even safer than we thought, so just wash hands after touching stuff”.

The vaccination became available to some people and that, plus continuing study, brought new data after a while—”vaccinated people are a LOT less likely to get infected if exposed, though not a sure thing, so still wear a mask around people other than your ‘pod'”, “outdoors makes an enormous difference, so you can go for a masked walk with your friends or socialize outside in masks”.

I remained cautious, knowing that my situation was less studied and not represented in the general instructions.

I got the Pfizer vaccine on the first day I was eligible and that lowered my stress though it didn’t change my habits. I felt even better after shot #2 because by then we had data that even people with pre-existing conditions who might not get full protection from the vaccines were experiencing reduced rates of hospitalization and death. But I didn’t change my habits. The “one wrong step could kill you” feeling began to dissipate, even as awareness grew of what a crappy thing COVID-19 is and how much I didn’t want Long COVID.

There wasn’t and still isn’t a way to directly measure protection and to see how well the vaccine did in my body. But there was correlation between protection and spike protein antibodies. So as soon as I could get a test for those, I did.

It was negative.

Not only was I not a ‘fully vaccinated person’ in CDC terms, I didn’t even have a number that let me consider myself anything above 0% vaccinated with regard to my risk of infection.

In all of that information void, I turned to probability to help me decide what to do and what not to do. I used the microCOVID.org Calculator and then moved on to create a microCOVID.org Risk Tracker spreadsheet for myself and to have my two pod-mates make one for their ‘fully vaccinated’ selves (with a different weekly risk budget than my very very conservative one).

This has been enormously helpful in my making informed decisions as I have navigated through the unknown. Those decisions use statistical risk to make safety choices about how much I can socialize with my friends or go out in the world. Having good information and methodology for those decisions helped enormously and contributed to my experiencing less stress around this than the very very very high stress levels I’d had before.

But they haven’t solved my problem: I want to see my friends more than my risk budget allows for getting together with estimated ‘vaccinated person who is sometimes working to the edge of a reasonable risk limit of their own’.

Unless I convince all my friends to track all their activities in their own Risk Tracker—instead of just following the broad CDC and San Francisco city guidelines around mask wearing—and have real week-to-week risk-to-others numbers based on what they’ve been doing, I need to use a stand-in estimated person that’s not overconfident. And that caution burns up my 21 microCOVID’s a week budget very fast now that the COVID rate is rising again.

Adding to this is confirmation that people on my medication often do not get a full response from the vaccines, and that sometimes getting additional vaccinations helps, but not in my case. At least not so far with J&J not doing it for me and my quantitative spike protein antibody test two weeks after Moderna shot #1 still showing negative.

I’m hitting the limit of what will work for me in terms of making my social safety decisions based on statistical probability.

It’s time to switch to a model more like safe sex: a current test showing you don’t have it. And the great part is, there are easy, painless, rapid tests which only take 15 minutes. It’s an expense, but it’s one that seems well worth it for my mental health.

I think it’s gonna be easier to talk my vaccinated friends into sitting on the back porch swabbing their noses before they come inside unmasked than it would have been to convince them to maintain a spreadsheet. 😄

The essential first step to deciding to adopt this approach is to confirm how accurate those tests are and how that compares to the risk level I feel comfortable with.

Based on the interim results of a clinical study where the BinaxNOW™ COVID-19 Antigen Self Test was compared to an FDA authorized high sensitivity SARS-CoV-2 test, BinaxNOW COVID-19 Antigen Self Test correctly identified 84.6% of positive specimens and 98.5% of negative specimens.

[source]

Currently the rate of COVID cases among vaccinated people in San Francisco is about 5.8 per 100K [source]. In microCOVID terms that’s about a 58 microCOVID “expense” to be around a vaccinated San Franciscan who has no symptoms and with no other information.

If BinaxNow has a false negative rate of 15.4%, now that “expense” becomes a 9 microCOVID risk they’re actually positive. A 9 in a million chance they have COVID right now.

The chance that they would transmit to me in that case are even lower, because there’s the ‘partner attack rate’ to consider in exposure in general, but also because being less infectious would correlate with being more likely to appear negative on the BinaxNOW test.

So, I can keep using my microCOVID.org Risk Tracker in general, but for in-person activities where I’m testing people before we’re unmasked together, I should probably estimate it as an activity that costs me 1 microCOVID per person per hour. (That is based on a 14% chance per hour of of getting COVID based on microCOVID.org’s updated estimates plus some downward adjustment for reduced infectiousness.) And where people have a known risk that comes out better, I can log them on a separate line in my Risk Tracker spreadsheet and reduce my “expense” even more.

This still means that getting together with 3 friends to play boardgames or a role-playing game for 3 hours is about a third to half my weekly risk budget right now, but that is often worth it to me!

(Thanks, Joe, for helping me think through the probabilities!)

Catching up and shifting focus

No posts since November! You can really tell my attention has all been over at Kabalor.com and its associated Patreon. Many many hours of game design and quite a few spent on getting better at terrain and mini painting. Also a lot of personal growth, physical recovery and restoration after my flattening experience of Prednisone for a couple years, and continued Discardia reflecting my changing interests.

I’m feeling more myself than I’ve ever been and more connected to favorite parts of my past selves. My child and teen self would approve highly of the central place that games and play have in my life now. 🙂

One big change is having even more focused time to myself; that is, time which I am in charge of and during which I’m focused on what I want and need rather than the expectations of others (or what I think will please them). That’s improving my creative work and making it easier to trim away the old stuff.

With meds that have prevented me from drinking (except very low proof and then only rarely), cocktails have dropped off my list of hobbies and writing interests. I am still deeply Discardian in nature, but realized I don’t want to be a self-help guru and so, for now at least, updating my book Discardia: More Life, Less Stuff has dropped off my projects list.

Becoming a person with a chronic health condition has sharpened my focus. It’s probable that I will not live as long as my grandmother and her father (something which in the past I’d strongly hoped for) and so I’m looking at fewer than 40 more years, possibly substantially less, but maybe not. Suppose it was half that? What would I want to have spent that time doing? Synthesizing my lifetime of learning and play into an original roleplaying game feels like something which is deeply enjoyable, emotionally satisfying, and a gift to the world (or at least my friends). If life is going to be harder and shorter than I expected, then I will choose to spend it on more fun and kindness and laughter and love.

This focus, this commitment to bring myself joy and share it with others, is making it easier to look at past things and say, “Awww, yes. That was nice.” and then put them away, perhaps to look at later again and perhaps not. I continue to sort through my oldest papers and souvenirs and to process them. That usually results in them physically leaving my life, though often I’ll keep photos where they bring up part of my story or just make me laugh.

As my terrain and minis hobby grows, my present bumps up against my stored past and the stored turns to story only, freeing space for me now and my future.

So, too, with my online presence. I am not as precious about my posterity as I once was. For my own offboard memory, I keep old things in digital form, but it doesn’t all need to live on the web in the same way. Archiving my past out of public view keeps it from overwhelming who I am now in the online world.

Here’s a picture of me as a toddler. Hair in a long ponytail with bangs over my forehead. Sitting on a sofa somewhere—not the house I grew up in—wearing a yellow sundress and barefoot. One hand is out across the arm of the couch, against which my back rests, the other has fingers splayed as I inspect it intently. Looking at something on my forearm? Exploring how the muscles work when I stretch my fingers? It is tiny Dinah focusing on herself, discovering herself.

A few months later I received immunization shots: polio, diptheria, tetanus, pertussis. Thankful on behalf of my healthy child self. Thankful in the present for all who are getting vaccinated. We all do better when we each do better.

A picture with badly aged color, from when the house I grew up in was little modified by my parents. Still a plain, light color. No decks, no ponds or streams. And here’s toddler-chubby-cheeked little me in a red turtleneck and white and blue plaid pants. They look like a pattern reserved for pajama bottoms today, but that was a different era. There I am in my childhood domain, that great adventure space of our backyard. I smile now and I turn the page.

My earliest known song/poem, written down by mother as I was singing to myself:

I thought I planned
A magic wand,
A wand, a wand, a magic wand
But what I wanted was a dawn
But they cannot know when
Because they’re not my friends.
The little ones run from side to side
Lie down here, lie down there,
And where, where, where.
Then it is the end.
Then I said I’ll go to bed.

Glad to have this. I tuck it away.

Pictures of a child self on a path I chose not to take, in white tights and a short white dress, modeling for the camera. Posing. Being pleasing. I view her with empathetic concern. “Girl, you don’t have to do that. Be you. Be how you want to be. Be free.” And there the path I chose—and to the credit of many of the adults around me was encouraged to be on—becomes visible as I horse around trying to carry our enormous cat, Bliful. Little me, hauling up the drooping tights, annoying things. Dresses are so impractical for DOING things. I leave the poses in the past.

Next a picture of little me with a book in lap, Curious George perhaps, wearing a practical little dress my mother made in a plaid fabric and with some wild paisley pattern behind me (a giant pillow? a wall hanging? a draping over a sofa?). I have long hair, bangs, bright and intelligent eyes, and a closed-mouth expression encompassing happiness, imagination, and determination. This picture, this, is one of the past Dinah’s still present. This can stay public.

Examining ‘To-Do’s, past and present

As I wrote on May 17th, I am Creating Space to Be Myself Now. A key part of that, and one which is probably a bit overdue, is letting go of thinking of my old lists of To-Do’s and projects as still current. What I’ve realized is that my experiences of the past few years are so significant that they change my priorities. If I ever decide to activate any of these ideas again—even to put them on a mental backburner with intention of doing them sometime soonish—they will be informed and altered by all that I have learned. That will make them better, should I ever want to do them later.

The first step to allowing new plants to grow is to turn under the old growth and let it turn to compost. I’ve been picking my careful way through a yard overrun with withered branches. Time to prune and put this fertile matter to better use.

The first category of stuff I want to clear away is the To-Do’s I set up for myself about good habits. Everything they tell you about only being able to install one, maybe two, new habits at a time and about it taking four to six weeks to get a habit into daily practice is true. Huge ‘New Year’s Resolutions’ style lists are only useful as a way of giving recognition to change you want to welcome into your life; honor them as that, but don’t try to tick all those boxes off every day.

The two, and only two, habits I want to work on now are about my wellness:

  • Meditate more often, because it eases my anxiety and inflammation.
  • Move more, because it feels good and promotes both my physical and mental health.

There are no other habits waiting in the wing. When these two are automatically happening more days than not, what I need next will present itself to me. I trust my future self to make the right decision.

So where do I have those old lists, clogging up my thinking space? The most obvious of them is the site Habitica, which is a combo of task manager, habit builder, and fantasy game. Fun! And it was useful at one time—my routine now of making the bed every day was formed using this tool—but I overloaded it. And why did I start using it in the first place? Because I’d overloaded the project and task tracker OmniFocus and needed something less overwhelming. Ha!

I still love OmniFocus as a tool, and find it particularly helpful for less frequent tasks (e.g., routine medical checkups; renewing business license) and big projects that take place over weeks, months or years. Since I’ll be keeping it, it’s time to thank Habitica for its service and let it go.

What load was I carrying in Habitica that I’m now setting down? Mostly lots of things that allowed me to check a box and feel like I’d accomplished something.

  • Habits I already have: make the bed, restore general order in the house, do laundry when it needs to be done, wash dishes every day, avoid caffeine, avoid Twitter, usually go to bed at a reasonable time, water the houseplants.
  • Habits I currently want to build, but for which I clearly need to find motivation in some way other than a checkbox: meditation, movement (listed here in many separate parts: strength-building, stretching, aerobic exercise).
  • Other commendable habits that I am not currently choosing to create as a daily part of my life: read all my backlog of books and digital articles, write letters and postcards, check my blood pressure every day (which seems to fall in the category of things that feel like they don’t provide a reward, only the potential for bad news), scan or document old papers or other souvenirs before getting rid of them, volunteer or do other helpful actions for a cause, learn computer game programming, learn another language, keep the area in front of our house swept and looking nice (much harder since fatigue as a side effect of my medications). (Oh yes, and losing weight, which is not a controllable project when your metabolism is being significantly affected by medication; I remembered this when I was unpinning and closing the tab that had Habitica and saw the pinned tab with Lose It! next to it. Not on the list right now. Bye bye!)
  • Pointers to the task list already represented in Omnifocus with encouragement to whittle that pile down.
  • Pointers to my inboxes, paper and digital, with exhortations to empty them. Ditto the stored collections of “to be processed” materials (e.g., genealogy and other family-memorabilia which I’d like to hand off to someone who wants it or document some of it and then let it go).
  • Creative work, which I am now choosing to routinely provide myself opportunities to do rather than assigning to myself as a repeating task. This includes writing, but also curation/sharing on my websites, sewing, D&D gamemastering,

Look at that massive load of expectations of myself I was carrying every single day! That’s way too much. That’s so much it’s just silly!

I am picturing myself laughing at a huge backpack, overstuffed and with all kinds of things hanging off of it on strings. Completely impossible for me to lift, let along hike along for day after day carrying it.

I wipe my eyes clear of happy tears and take the whole thing apart, tossing much of it away. It flies through the air, transforming into moldy applecores and old packed sandwiches, and lands in the trench I’ve dug down my mental garden, ready to be covered over and turn to new soil.

Why and How I Changed Paths

I was diagnosed with the mildest form of a rare autoimmune disorder in fall of 2017, the first symptoms of which had presented themselves at the end of that July. This was just over one year after my biological father had died and I’d suddenly become executor of his estate, and point person for all matters pertaining to cleaning out and selling his run-down and junk-filled little house.

I was prescribed a short dose of prednisone, a steroid which is highly effective at knocking disorders into submission, if not entirely into remission, but very hard on the body’s systems otherwise. I was a whirlwind of activity that fall—adding significant storage and worktable space to our home office most notably, but active on a great many projects in parallel—and the week of steroids only kicked that up a notch. The meds did their job and my symptoms abated. I felt a huge weight lift also as the estate officially closed and, with the scattering of his ashes, my duties as executor came to an end. I turned my attention with relief and eagerness to my own projects, and somewhere inside I began to give myself permission to stop scrambling so hard

Some of that slowing down was just plain stumbling. It was the fatigue of all the hard work I’d been doing and the shocks I’d been weathering, exacerbated by life under the Trump Administration. The anxiety brought on by the past few years—compounded by perimenopause and (though I didn’t understand it well then) the side effects of my medications for my disease—was showing its fraying edges.

Thanks to my years of practicing Discardia, my instincts in times of overwhelm and low mood are good. I began to create space around myself and turn my attention from that which drains me to that which restores my calm. I unfollowed a large amount of my Twitter list, already quite low, to tune my Twitterstream to a generally more positive mood. I returned to my love of games and began thinking about how to create happy, positive, calming games. But I was feeling very tired.

At the very end of December 2017 and in the first days of 2018 I began having symptoms of the more intense form of my autoimmune disorder and my life changed completely. Because my symptoms I had to change major aspects of my daily routine, even after I very rapidly got a confirmed diagnosis and began taking medication—twice the dose of steroids as before. Extreme sensitivity meant I had to change my wardrobe entirely, not only fabrics but the style and fit of clothes. Massive fatigue transformed me from a “these are the 30 things I want to do today, but here are the most important 10” person to a “it was a good day, I got 1 thing done” person. And increased anxiety and overwhelm (plus being on immunosuppressants) further limited my ability to participate in social and political life. The medications distorted my body over the months, bloating my torso and giving me ‘moonface’. But they did work to put the disorder into submission, possibly even remission entirely, though I won’t know until I fully taper off the medications.

And there’s the real challenge. Prednisone works great to knock disorders like mine into submission, but the hell it puts you through along the way is brutal, so you want to take it for as short a time and as low a dose as is possible while remaining effective. Other immunosuppressants like, the post-transplant medication Cellcept, can maintain that symptom suppression with milder side effects (for me mostly bloating and distortion of my lower torso, plus some fatigue). So as soon as my symptoms abated, I added Cellcept to my regimen and began the agonizingly slow process of tapering off prednisone.

You can’t just quit prednisone, you have to wind it down very, very slowly. And because—at the kind of peak dose I was on (40mg/day)—it says to your cortisol system, “Hey, I’ve got this, go take a vacation” you find that side effects continue to be life-disrupting for months and months. I dropped from 40mg a day to 30mg a day of prednisone on February 13, 2018, after taking that highest dose for just four weeks. My taper reached 20mg a day on March 27, 2018, and 10mg a day on May 12, 2018. But it’s that last part that is the most difficult to wean your body off of as you wait—and wait, and wait, and wait—for your cortisol system to wake up again. It’s May 24, 2019, and I am just next week hoping to bring my tapered dose down to 2mg a day.

Had I known then what I know now, I’d have done my taper differently instead of going too fast last summer and winding up needing to spend three months holding at 5mg a day. Now I taper ridiculously gradually by altering my dose within a week. I was at 3mg a day. Then after at least two weeks at that dose, I started taking 2mg instead every third day: 3/3/2. If that is giving me trouble at the end of the first week, I go back to 3mg a day for two weeks before I try it again. If it’s okay, then after two weeks of 3/3/2, I try 3/2/2. That’s where I am now and it’s going well. Next Wednesday I’ll begin a couple weeks of 2mg a day before I evaluate whether I can proceed to 2/2/1. Best case, which I’m learning is unlikely, I’ll be off prednisone in about three months.

Whenever I do finally break free of prednisone, I need to spend at least another month letting its influence leave my system before I can start to consider beginning my Cellcept taper. I’m hopeful (and pretty confident) that that is not nearly as rough a process. But even so, I can expect that the soonest I’ll be living without my body altered by these medications or the presence of this immune system disorder will be over a year from now.

My life has been radically changed for multiple years. My fatigue and anxiety forced me to bring my world to a standstill; to stop the ride so I could get off and evaluate things. And that evaluation and this experience have brought me new skills (meditation and acceptance, most valuably) and clarified priorities. I am not the same person I was, and for all the difficulty, I feel good about who I am now.

Even if I had my old energy and health back this instant, I would not resume the life I had before. I am closer to center than I was and I like that. I continue to work to regain my strength and vigor, but for new priorities. I feel that I am standing in the early morning sun beside a large field, shovel in hand and ready to continue the slow, satisfying work of turning the earth for a garden.

Creating Space to Be Myself Now

One of the key lessons for me of the past few years is that it detracts from my wellness to try to have both my list from before the various crises in my life and my list of what I need and want to do now. However much I say, “oh well that old list is on the back burner”, it is still bubbling and using my mental fuel. I can’t have two #1 items, even if I tell myself that one of them is not active for the moment. I gotta recalibrate and bring it together in one calm vision for myself.

The best thing about accepting that is that the process of integrating my expectations of myself is an inherently therapeutic process. Though the enhanced calm is important, most of that benefit is coming from really giving myself permission to drop things. Not just shove them back ‘for right now’ (i.e., years), but let them go. Discardia is good for the soul and for reducing that overwhelmed, inflamed feeling.

The biggest change is re-orienting myself to my writing and other creating. I am refocusing myself on the creative work and away from the idea of producing products on a particular schedule. It doesn’t make anyone less of a Real Writer to give a work the amount of time it needs to come to fruition. Nor is it mandatory to bring out a new book every couple years. The publishing industry would like you to, but I don’t write for a publisher; I write for myself and my readers.

As I’m sure a lot of stay-at-home parents or others who are outside the paycheck economy have struggled with, validity is not measured by take-home pay. Much of our culture sends a different message, so it takes work to find solid footing to appreciate yourself and what you do. In my case finding that footing is helping me recognize a few “to-do” items on my list which were more cargo cult enacting of “being a publisher” than necessary to the process of writing and sharing my work.

One thing that prompted some of this change is that the medication I was prescribed about a year ago limits me to two cocktails a week. I find I really can’t be an active cocktail writer under that constraint and I don’t want my work and my wellness to be in conflict, so I’m giving cocktail writing a big “I love you, man, you’re the best, no I mean it, I love you, all you guys” sloppy hug and going home.

Not writing a sequel to The Art of the Shim: Low-Alcohol Cocktails to Keep You Level lowers the need for a lot of the capital P publisher infrastructure we’d created. Simplifying that part of my life is some of the work I’m doing this month and I’m already enjoying the lightness it is giving me. I don’t have to put out a book this year because it’s been “too long” since the last one. I don’t have to feel guilty over a long list of posts and essays I thought at one time that I’d write. Cool ideas! Okay to let them go!

This exercise in looking at where my time vs. where my mental energy goes vs. my actual current priorities has also unveiled some time sucks that I can prune away. Goodbye, Twitter. It’s not me, it’s you. You make me anxious and distracted and frankly, you have too many nazis and misogynists and racists and homophobes and paranoid dudes who think giving babies free food is gonna take food off their own plate. Ugh. Good riddance to that distraction.

I looked at the carefully curated list of accounts I followed, added a lot of them to the website feed reader built into WordPress.com, let go of the “need” to keep up with some, and made a monthly reminder to check the other two that couldn’t go in the feed reader to see what they’ve been up to. Then I added the Switcheroo Chrome extension to redirect me to my WordPress Dashboard every time I try to go to Twitter.com. It feels fantastic and I am already getting a lot more done with my day.

Yes, I’m on Mastodon, but both it structurally and my decision of the number of people I follow on there are designed to be very quick to keep up with. It doesn’t devour twenty minutes of my time multiple times a day in the way Twitter can.

I’m excited about this paring down and focusing. I’m excited about the space I’ve created for healing and for whatever creative projects I want to do now. I’m grateful to myself for the permission to let go, to be done with things. My shoulders feel lighter.

I’ll be posting more in the coming days as I part with some of these past projects. I hope you enjoy this somewhat random tour through my interests. 😀

Low-Spoon Mastodon Migration

Probably you’re hearing about a less toxic social media environment you’d like to or are being encouraged by friends to try, but the idea of restarting in a whole new thing exhausts you. Don’t worry. You can save your spoons and take this in very, very small steps.

The first step is to know that it is your choice and you can do it if and when you want.

If someone you follow is moving to Mastodon, ask them for the URL to see their toots (the mascots are elephants not birds, so toots not tweets). It’ll look something like this: https://mastodon.cloud/@metagrrrl

Knowing that you won’t lose touch with friends who switch to Mastodon can really help a lot with taking this at the pace which is most comfortable for you.

Another step you can take is to watch this couple minute overview, so you’ll know what they’re talking about:
https://www.youtube.com/watch?v=IPSbNdBmWKE

Mastodon runs on many independent servers, called ‘instances’. I find it helpful whenever they say “an instance”, to hear “a community”.

Because each community (instance) sets its own rules, it is possible to find one which matches your values and, most importantly, values you as a member.

Everyone should base their Mastodon account in a community (instance) which will protect its users in the ways which matter most to them.

Finding the right community (instance) seems like a huge task, but it’s not that bad. It’s kind of like choosing your email host; yeah, it’s bit of a pain in the butt to change later, but it’s not the end of the world if you decide to do so.

A great way to start thinking about where you might want to have a Mastodon account is to look at the rules for the communities (instances) where your friends have theirs.

Remember: just like email hosts, you and your friend don’t have to be with the same one to communicate with each other.

Finding the rules for a Mastodon community (instance) is easy because they have a common URL style: just add /about/more to the end of the base URL.

For example, https://mastodon.cloud’s rules are at
https://mastodon.cloud/about/more

You can see some other communities’ rules at
https://mastodon.social/about/more
https://social.tchncs.de/about/more
https://cybre.space/about/more
https://mastodon.art/about/more
https://anticapitalist.party/about/more
https://mastodon.xyz/about/more
https://wandering.shop/about/more
Some place more restrictions on acceptable behavior, some fewer.

Next you might want to explore why this effort could have a payoff for you. Along with the opportunity to be in a less toxic community than Twitter, as far as the rules are concerned, there are some differences in the way things work which help to reduce or eliminate harassment and other negative experiences.

Perhaps the most subtle and important difference is between Twitter’s retweets and Mastodon’s boosts. Boosts don’t include text from the person doing the boosting. There’s no ‘boost with comment’, thus no performative aspect, avoiding “Heed, my followers, how I dunk on this fool!”

That doesn’t prevent someone sharing screenshots or linking, but because Mastodon’s reply functionality only broadcasts to people who happen to follow you both, one person’s massive follower count won’t unbalance the conversation.

I described this difference as subtle and important because when the design doesn’t enable and encourage pile-ons, people behave differently. Some of what makes Twitter so often unpleasant seems to be the default behavior of the tool, not necessarily that of the user.

That’s the subtle stuff, though, and there are big, obvious differences which are under your control in Mastodon, and which allow you to change your experience for the better.

You can adjust how public any individual message is.

A toot can be
• Fully public, appearing to your followers, the public timelines, anyone looking at your profile;
• Unlisted, appearing to your followers and on your profile, but not in the public timelines;
• Private, appearing only to your followers and people mentioned in it;
or
• direct, appearing only to people mentioned in it.

Also you can “lock” your account overall, requiring your approval for a new follower to be added.

Beyond that, on Mastodon you have much more ability (though less need) to hide things. Since it’s not commercial, you won’t see ads in your timeline. And your timeline is just messages as they come out from the people you follow and only that — no algorithm messing with what you see.

On Mastodon, if strangers are bothering you, you can block notifications from people you don’t follow. You can also block or mute individuals. You can even hide everything from a specific community (instance), so you don’t see them and any of your followers from there are removed.

Text filters are coming, but are perhaps less necessary than on Twitter because most Mastodon communities have a culture of using Content Warnings. And the content warnings actually mean something here, because of the way they are built into how messages are written and read on Mastodon.

As you write a toot, you just click the ‘CW’ at the bottom (next to where you’d add an image or set how public the toot is) and a separate field appears for you to write your warning. When the toot appears in anyone’s timeline, only your warning appears with a “SHOW MORE”/”SHOW LESS” toggle to reveal the rest of your toot.

What is purely delightful is that another part of Mastodon culture is the use of CW for all sorts of things, including jokes with the punchline hidden. 🙂

That’s not even all the hiding controls. You can learn more on this incredibly helpful page: https://blog.joinmastodon.org/2018/07/cage-the-mastodon/

You can try Mastodon without making any commitment to switching over to it. In fact, that’s what I recommend. Find a community with a set of rules that feel good enough for you to hang out at their gathering for a while. Go to the about page of their community (like https://mastodon.cloud/about) & look for a signup form & its big blue button. Create your account and personalize your profile just a little, probably making it match your Twitter account so it’s easy for friends to recognize you.

Then ‘toot’ something like, “Hi, it’s me. You may also know me over on the bird site as [your Twitter name].”

On Twitter, you can tweet something like “I’m playing with Mastodon a little. You can find me at [your new Mastodon page]” or DM that to friends. If you’re making a public announcement, you might want to put your Mastodon page in the bottom of your Twitter bio.

It is absolutely fine to just let that ride for a little bit. People join Mastodon all the time and if you don’t have connections over there at first, you will likely find them joining you over time. So that they know you are hoping to meet with them in Mastodon, you may want to toot a little something every now and then.

You’ll automatically be set up to follow the administrators of your community and some of them are quite fun. (Eugen of mastodon.social, for example, is an avid booster of cat pictures. Though my personal account is in a different community, I follow Eugen for the cheerful kitties.)

To find others to connect to, try searching for the names or usual usernames of people you know from other social media sites, or for hashtags of things you like. You can even save a hashtag as another timeline column in your view of Mastodon. (I have #mastoart there, for example, and so I always have cool art to look at.)

There’s a lot more you can explore—and I’ll link to some things below—but the steps I’ve described are plenty to dip your toe in the water and find out what this whole Mastodon thing is about.

Personally, though it took me a little while to find the spoons to get it set up, I find it so much nicer an experience that I have more spoons using it than I do using Twitter.

Bonus stuff:

You can learn a bunch more about Mastodon here: https://joinmastodon.org/

In a nutshell, the Mastodon interface is laid out in columns, with compose/search on the left and details (selected toot, user profile, search results, etc.) on the right. Between them are other columns with timelines, the leftmost one being the toots of all those you follow. You can add columns for hashtags you’re interested in by searching for that hashtag and then, when it’s the result on the right, using the controls icon (shaped like sound board sliders) to “+ pin” it. You can choose to have the local timeline (everyone from your community’s toots) and/or the federated timeline (local plus everyone they follow from other communities’ toots) visible, but frankly I find them way too busy to look at. If you’ve ever used Tweetdeck, Mastodon is going to feel pretty familiar. (There are other interfaces for Mastodon, but I haven’t explored any yet.)

One important thing to know about your privacy and Mastodon is that everything you post, even direct messages, are theoretically visible to the system administrators of that Mastodon community (instance) and any other community (instance) to which your toots or direct messages travel. This is not very different from email; odds are extremely slim that anyone would ever access it, but it is technically possible. Fortunately, because all the users of Mastodon are spread across many communities and thus for any community the ratio of users to administrators is much smaller, you can get to know your admins instead of them being some faceless employees of a distant, giant corporation.

If you are someone who’s been a victim of harassment, you may want to limit how public your posts are and “lock” your account so that you can be aware of the rules of the communities where your followers are before you approve them, allowing your posts to appear in the federated timeline for their community (which is made up all the toots from those in that community plus the toots from those they follow, thus potentially you).

In general, people use content warnings in the traditional sense for “US politics”, “violence”, “injury”, “hate speech”, “self-harm” (including suicide because even the word suicide is a drag, so lumping it under “self-harm” is helpful), as well as for “alcohol” and “food”. They also will use the CW feature to be kind to others by hiding very long toots—Mastodon allows messages up to 500 characters—under a short description, and, of course, to hide spoilers relating to shows or sports. (I’ve been especially grateful for that cultural norm as it means I don’t have to wade through pontificating about shows I don’t watch!)

My favorite description of the subtle design decisions on Mastodon is this from https://fosstodon.org/@codesections, “Mastodon makes it as easy as possible to talk *to* other Mastodon users, while making it harder to talk *about* other Mastodon users.”

Oh, and yes, Virginia, there are friendly, funny, and pretty bots still on Mastodon. Not as many as there were on Twitter, but with the recent API changes over there, I expect increasing migration. My favorite, which I heartily encourage you to follow to make your timeline visually nice every day with lovely old illustrations of fruit, is https://botsin.space/@pomological.

Deep calming games

After receiving an alarming medical diagnosis mid-month in January*, I've been very actively using computer games to help manage my situation. This autoimmune disease manifests itself in scores of itchy bumps. The initial treatment is prednisone, the main side effects of which have been insomnia and mood alteration (primarily an increase in anxiety). Games have been enormously helpful in managing both, and in lowering my stress levels overall as I deal with this.

While many games can appear soothing in early stages, they are often designed to increase in intensity, which is counter to my goal of calming my system. Below are a few which I've found which do work, and which have interesting side benefits. There are three key patterns I leverage as I (and my meds) work to reduce inflammation.

 

1. Stillness as a Constant Option

The one absolutely vital quality of a deep calming game is that at any moment you can stop the game without penalty to take a deep breath, let your eyes focus on the other side of the room, or otherwise pause not only your hands but your mind. This can take the form of simply stopping doing anything—as in turn-based games where there is no ticking clock—or changing out of the game screen—as in games which pause and retain your exact position when you switch applications. Some games are mostly turn-based with brief sections that don't allow pausing; Another Case Solved is a good example of that non-ideal mix, but it is just calming enough to remain on my list.

 

2. Impulse Interference

It turns out when you're trying not to scratch, it's possible to divert the physical world pattern you shouldn't act on into a virtual pattern where relief is easily available. The game element you want here is a random or semi-random resource which appears and needs to be 'harvested' or otherwise responded to individually. Collecting the magic fountain energy in Sunken Secrets or the tax revenue in Townsmen are ideal examples. I found that my brain slipped pretty easily from "argh! itchy spot I want to scratch!" to "aha! another coin to collect!" and that, amazingly, the act of touching the resource on my iPad screen with my finger took away the urgency of a specific physical itch on my body. This trick was probably the key ingredient to my getting through the initial awful weeks while I waited for the corticosteroids to begin reducing my symptoms. It's highly likely I would have scarring if I hadn't been able to divert that scratching urge.

 

3. Sense of Positive Action

Maintaining an optimistic attitude during very gradual change is a challenge. When my body is less able and my mind is less focused that becomes even harder, especially in those grim grey hours of the night when prednisone wakes you all the way up after three hours sleep. Games offer a space where I can act toward both short- and long-term goals and feel less powerless. The difference with deep calming games is that this needs to take place within a low-conflict (or at least very low-consequences) mood. When managing anxiety and using mental imagery to reduce bodily inflammation are the goals, tough battles against powerful foes are definitely not my friends. Enter, therefore, games of constructive, peaceful acts which build upon each other. These can range from the very simple—growing my fish and expanding my pond in Zen Koi—to the more ongoing and epic—building my farm and improving things for my imaginary neighbors in Stardew Valley. The tough part here is finding a game with the expansiveness that makes it maximally calming and yet which doesn't require fighting off attackers. (I've got enough of that going on with my autoimmune system, thankyouverymuch.) I am a long-time fan of simulation games, particularly old Windows city-builders and economy-simulators like Pharaoh and Cleopatra, but there are very few around which don't involve (or allow you the option of turning off) combat as a major part of the game. Farming and house-building games are the dominant form now, but many of them are tainted by in-app purchase models which render the games less fun as you progress in an effort to make you spend money to make it easier again. That flaw is what led to my abandoning Gardenscapes and Homescapes, neither of which I can recommend anymore despite their fun aesthetic and sense of humor. For the moment, Stardew Valley, and to a lesser extent Townsmen, is best to fully engage my mind in creating and achieving goals.

*Thanks to corticosteroids this diagnosis is not life-threatening, but it is life-altering.