May Day Memories


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What is it about the first day of May, anyway? If you’re Neo-Pagan, it’s a major holiday (Beltane); if you’re in organized labor, it is a landmark in the fight for an eight-hour day–and if you’re a Morris weirdo, it means getting up in the pre-dawn and preparing to do this.

I come from Morris weirdo roots: About 35 years ago, my then-husband and I ran into an enchanting woman at a convention who was wearing all sorts of interesting buttons, and she told us about Morris dancing. It sounded interesting; she was smart and sexy; so we went and got sucked into the ravenous mouth of Tradition.

I’ve always felt a little weird being a Morris person, seeing as the tradition is English and I am BIPOC, but our local team in Madison, WI was completely welcoming. (I was later amused when I did my DNA and discovered that a full 55% of my randomly-compiled DNA comes from Britain anyway.) My knees crapped out on me early (yay titanium!) so I didn’t do much dancing–especially as I am also bad at knowing my right from my left. Instead, I became our team’s Jack in the Green. This traditional role (there are several, called characters) usually is played by the village blacksmith, who is gotten properly drunk and then put into a wicker tree-shaped frame which is then decorated with greenery. (You need the blacksmith because that thing is sheeping heavy.) Instead, I wore green everything–tights, tunic, and a cloak I spent hours and hours sewing leaves upon–and green greasepaint.

This greasepaint fooled at least one lady into assuming I was white, and I had the nigh-numinous experience of Being Behind the Color Line as she explained to me that she wanted fertility withdrawn from her sister, who was *oh horrors* Consorting With A Black Man. (At least she didn’t use The Word. This has given me some real sympathy for you pale folk–I couldn’t think of a blessed thing to say to this woman, because when I’m truly in shock, my brain grabs some popcorn and just watches.)

I loved being Jack. I had an ailanthus twig (about three feet long) for a wand and a pair of fish puppets. I didn’t even try to not move my lips–here’s a tip: If you focus on your friend as if you’re listening, the audience does too once it realizes it can’t stare at your jaw waiting to catch you at it. It was a huge amount of fun, and freed my deeply squished Performer. (I’m an introvert whose large black wardrobe stems from years of being BACKstage.)

And the fertility is real: My body used to “have late periods” every so often; basically my progesterone would cut out at about day 37 of my cycle and I would miscarry. So I was on heavy-duty meds, but still no baby–until we started Morris dancing. Baby #1 was discreetly conceived while we were illegally camping out at the May Day site, and Baby #2–who just showed up at random. much to our surprise–was medically confirmed two years later to the day. Hmm, magick: I’m watching you now.

And then life changed, and I ended up here in Massachusetts. I was too busy to bond with the local team, and Morris faded into the background of my memory, until this morning.

My son (Baby #2, now 31) lives with me, and he was brought up doing Morris. Just now, he packed up his bells and his flute, and hiked off in the freezing pre-dawn to meet up with the local teams on the banks of the Charles, all ready to dance the sun up once again. I have a rotten cold, so am staying in this year, but I’m delighted he’s there. It’s a bizarre little ritual, but it’s ours.


The Day My Brain Broke


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I’m tempted to stop going on vacations.

I tried to take a couple of weeks last month because I just wanted time off to chill and make art. Instead, I had to wrestle with the fascinating experience of Abilify discontinuation syndrome. The best way I can describe that was that it was akin to being on a three-week-long emotional acid trip. I never became psychotic or delusional, although I did have a couple of major epiphanies–the Abilify, in its desire to save me from myself, had been bossing around my dopamine for over a decade, and had padded me with chemical bubble wrap to protect me from my emotions.

Very luckily, I have mad professional skills if I say so myself, and thus I did all the stuff: I was in close communication with my providers, I used my lovely support network, I journaled, and I made art. After roughly five or six weeks, I was back to normal, other than a mild case of tardive dyskinesia, which seems to be on its way out an ångström at a time.

However, after the above, I was ready to go back on vacation. Last Thursday (April 7, 2022) I was delighted to be scooped up at work by Angel and Saint, the lovely friends who live in a restored farmhouse in rural Connecticut. (A side note: I had many Zoom tours of this house, making the actual experience a tad surreal, as if I were in one of those numinous locations in a dream you just barely remember.) We chatted, I met family members, had a snack at teatime–and then as evening approached, it began: I felt a little queasy. The itty bitty tummy is a sheeping diva, and so this was nothing new. I went to bed at my usual ridiculous hour, Angel and Saint went to choir practice after teaching me where the coffee was, and I figured I’d feel better in the morning.

I didn’t. Itty bitty tummy was empty, so when the inevitable began, it was extra-awful. I was grateful that my hosts were on a different floor so I could be wretched in privacy, but at 4 a.m. some survival instinct kicked in and I tapped on their bedroom door. We ended up at an acute care place, where they did things I don’t remember (Reader, take note). And then it happened: I stopped making sense–or memories. I had severe aphasia; I am told that somehow I used the word karaoke in trying to talk to the doctors.

Angel filled me in on Friday later. I have a few dreamlike flashes here and there–realizing one of my earrings was missing, being snuggled by the fiercely protective Angel, my strong and silent daughter having hysterics at my bedside, and one long vagueness of trying to find words and gamely tossing words out in hope that somehow people would understand me. But that’s it. (Angel told the docs some important piece of information, and apparently I greeted each of the *three* repetitions with surprise.)

This was worrisome, so they did some CT scans and whatnot, and told us it was either dehydration or a mini-stroke. Have a nice day, ma’am.

Angel wasn’t having any. She got hold of my daughter, who agreed with Angel’s gut feeling that I needed a real hospital. So back north we headed–Angel’s husband Saint logged sooo many hours driving hither and yon!–and I ended up at the real hospital in my city. I was rapidly admitted, given an IV and my fifth anti-nauseant shot, and lined up for testing in the morning.

I woke up feeling perfectly fine. Maybe not ready for breakfast, but that was a moot point, as I was NPO since midnight because testing. I could talk and I remember Saturday quite normally, as opposed to the long blanknesses of Friday. After an echocardiogram (heart ultrasound), a stress test (I am quite out of shape, but not dangerously so–test was embarrassing but I passed), and a brain MRI (John Cage meets industrial meets percussion minimalism! What a LOT of different noises! The tech now thinks I’m a weirdo) the Real Hospital said, “Uh, dehydration and *maybe* a TIA? She’s fine now! Check in with your neurologist just in case!” And home I went, my vacation having been exceedingly short.

My neurologist is a mighty man of science with more compassion and work ethic than I’m used to. Instead of calling the office to talk to him in three months, I used the patient email system and he got back to me immediately.

It hadn’t been a TIA after all–the symptoms went on too long and weren’t quite right. Instead, I had been literally delirious from dehydration.

Delirium? Really?? At first I found this a relief–no stroke issues to fret over, and by golly, I had always feared I was that lady in the old movie whose aneurysm was inoperable, but now the MRI gods have proclaimed Mr. Brain to be A-OK. However, as the week progressed (and Mr. Brain finished getting back online), I figured out that delirium is kind of near the end of the dehydration journey. What the what?

On that Thursday, I had had a small beverage with lunch, and then a couple of sips of tonic water about three hours later. (In between I had the delightful social occasion of gabbing with Angel and Saint as we drove down to Connecticut, so BIG distraction.) I didn’t feel particularly thirsty. However, by the time the acute care people put in a line, I hadn’t been able to hold anything at all down for ten hours, meaning that on Thursday I had one cup of coffee and one half-bottle of tea–and then no other fluid for about 16 hours. (In case you’re wondering why the lack of peeing wasn’t a clue, I will overshare that I’m used to not needing to pee, especially at work, where there are distractions.)

Gentle Readers, this sort of thing is very bad. People go on hunger strikes, not thirst strikes, because those would be very, very short–about three days long for the average person. I keep forgetting, but Teeny Tiny Tummy means I’m no longer average: I am supposed to be working much harder on getting in the basic raw materials. Protein, yes–but water comes first.

I am guesstimating that I’ve been chronically dehydrated for weeks if not months. Not entirely sure why, but I’ve been making do with about a liter and a half per day–which is about half what it should be. Thus, between that and having lost 115 pounds of backup storage space, I hit the wall relatively quickly.

As a coda: I felt AWFUL over causing such a kerfuffle and needed the reassurance of talking to Angel *twice* before I forgave myself for having needed to be loved and cared for. It would seem that I have more to work on than just my fluid intake . . .

So check yourselves, folks. Two liters per day, or whatever it takes to pee clear. (Your urologist will also thank you for this.) Mr. Brain needs that, else he breaks. And a heads-up? If you’re lucky like me, dehydration can cause nausea and vomiting, setting up a vicious cycle which needs emergency medical care: I now have a large adhesive burn from that first IV, but that may have saved my life.


On Arting


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Art is inherently scary. What the sheep does it mean, all those countless people falling prey to what is really a neurological illness—being compelled to endlessly create, whether it be Moby Dick or a hand-knitted scarf? Art makes no sense, really. Never has; I think that’s part of what the resistance to abstract painting and sculpture was all about: It swept aside the screens and forced us to seriously consider the implications of the saying, “Art for art’s sake.”

Art is the result of the universe reaching out for eternal fruition; we artists are the very tiniest tips of the Creator’s fractal. Sounds great on your resume, but actually it’s kind of a pain in the sheep. Forget all the high-minded words over What Art Means and stop agonizing over the weight of your content, you precious flower, you. Instead, create—endlessly create. Let it flow out of the parts of your body which you use as your art tools—because if you don’t, you will get sick.

Let me repeat that: You. WILL. Get sick. Physically, spiritually, psychologically. You are already fragile—a receptor made from conception to tune into the highest frequencies—and you will spend a higher amount of time than Average Joe on bodily maintenance. Sorry about that. And that’s if you are a good bunny and create, create, create.

If you don’t, you get what I will call spiritually constipated. All that untold, unsung, and unbeaded Stuff just piles up on itself, like the chocolates in Lucy Ricardo’s assembly line. Moreover, your poor little Universe Antenna is straining itself to the utmost to reconnect. This results in all sorts of nonsense. For me, it worsens my mood, causing a spiral in which it becomes harder and harder to function. It also turns up my fibromyalgia, and my ADHD batters itself against its physical cage like a frantic bird. Yuck.

Don’t spend too much time erasing and editing—that’s all very well and necessary, but unless you have a slot open for an endless slew of new art, the revision process can devolve into a comforting nanny who shields you from the nasty Universe.

Create, create, create.

Off My Meds


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Just when you think you’re jogging along in your OK-enough-I-guess rut, Sheep Happens.

I am an N and a J (the other letters flip-flop on me depending on my mood when I’m taking the test), so I make sense of the Universe by logic and deduction to the best of my ability. So I *think* this all started when I got kidney stone surgery last year.

My urologist put her foot down, having seen me many times for this, and I ended up with an endocrinology workup which showed that all I needed was a huge mucking dose of Vitamin D. So I took it (am taking it still), and as a result. . . my mild but chronic depression gradually faded away.

As many before me have likened it, it was like some cobwebs got swept away. And gradually I noticed that my years-old anxiety seemed to be ratcheting up. We raised my mood stabilizer—and it actually got worse.

In a phone session, my prescriber and I had a simultaneous epiphany: It wasn’t anxiety, it was an extra-pyramidal effect called akathisia. Bad news. I needed to come off the drug.

We tapered me off relatively quickly because the akathisia is really hellish (think of having had too much coffee and wanting to shake out your entire body, all the while some brain chemical or other is saying “Danger, Will Robinson!”), and here I am.

At first, the “anxiety” morphed at first into plain old fear: What will happen? I’m off my meds! Aieeee!! Visions of my manic episodes flashed, coupled with terror of their depressive partners. Would I go back on the rollercoaster?

Well, not necessarily. My life is really stable right at the moment, and while I was on the drug, I did a decade’s worth of work on the trauma that pushed me onto the ride to begin with. I figured, there are other stabilizers out there we can try if we need them, so let’s poke our nose out and see what the world is like.

And the answer is, really intense! It’s sort of like being on an epistemological acid trip. I feel a little naïve. All those years the drug was keeping me stable, it was doing other things as well—and it turns out that those things meant it was buffering me from my emotions. And both my PTSD and my ADHD are like kids on a holiday right now: Whooo hypervigilance! Focus? What’s that?

Yet despite all, it feels like a normal and healthy process. My brain is Doing Stuff as it readjusts to life without the drug, and I kinda need to stay out of the way.

The first thing I noticed was that I am experiencing pleasant sensations more intensely: Washing my face was its own mini-epiphany of the joys of warmth and friction. Of course, there’s a flip side: I have become what a co-worker charitably called “irritable,” partly due to my getting a lot less sleep, I suspect.

(I am still on a fistful of pills, what with the heart disease and fibro and all, as well as the possibly-not-as-needed-now anxiolytics. But in the recovery world, they’re just the backup singers.)

So in short, I am having a neuro sheepstorm. I took advantage of my accrued leave, and bugged out of work for two weeks, almost before I said anything I really shouldn’t have. My plan is to just catch up with who I am now and what my dealio is: I’ve lost 100 pounds; I turn 60 this year; my creative process has been on a slow but persistent uptick. And now I’m off my meds.

Pandora Sheeps Up! Film at 11!


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It is said that when the curious human warrior Pandora unleashed all the evils of the world, she found Hope remaining in the corner of the box. Nice souvenir; a good thing to bring back to the wife and kids, as they hastily pack and leave town to escape the waves of encroaching war, pestilence, and famine, not mention public opinion: No medals for Pandora.

I have to wonder what the hell Hope had done to be so entrapped—as Sesame Street has it, “One of these things is not like the other ones.” Perhaps the ancient storyteller had a vision of the modern trope of the innocent convicted?

But instead of the meek little Hope teaching her unsavory neighbors how to better plead their cases and helping them Google, I suspect she was there under entirely different circumstances: She was emplaced to be their prison guard, one single warden keeping all the evils of the world from fiddling with the latch. It’s not too hard to imagine that the evils want revenge after those countless millennia of golden humanity untouched, and thus the average morning newspaper, in which they crush and mangle the shreds of Hope remaining.

But she must have been very powerful indeed for the Universal Is to have given her that job, and thus we should similarly treasure her and invite her back into our hearts, fanning a welcoming flame with our leaden and diffident hands. She has the power to give us armor against her former internees, and help us forge weapons for the Good Fight.

“I’m sorry,” whispered Pandora. “I’m so, so sorry.”

Hope sniffed, brushing a slowly-moving shred of Guilt away from the close-cropped hair. “Nonsense. Let’s not waste any time mucking about here. We have a world to save, hero.”

And save it, they did.

(Oh, did you want the details of the story? Nope, you have to write them yourselves. We all do.)

Salad Forks and Knitting Needles


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Today I was a very little dismayed when a guy I’ll call Troy came in to the place I work. (I’m a certified peer specialist, and I help run a small group of recovery learning centers, where people who’ve experienced mental health diagnoses come to hang out. We peers also have lived experience, and we’re trained . . . differently than your average Mental Health Professional.)

Troy has something called word salad, in which his language gets garbled. People with this are in a way sort of like having killer mega ADD, in which they distract themselves second by second: Sentences merge into other sentences, words interweave with their cousins and their sisters and their aunts, and the result is that the simplest attempt at conversation is about as linear as a plate of spaghetti. It’s Ulysses in a blender.  

I have a really beautiful verbal processor for my native tongue, and so I find talking with Troy to be fascinating. But I just realized that the dismay came from old memories of what talking to Troy felt like. See, it makes my processor work very hard, and it’s not used to that as a rule! Not since grad school, in fact. I’m a weekend jogger who just ran a half-marathon. So the net result is that I’m exhausted now and my brain feels sorry for itself, unsure of any logical connection and unwilling to make decisions.

(“Ooh, I know! Let’s attempt to write something now and put it up on the Interwebs!”)

Troy hadn’t seen me for several years, and approved of my weight loss in the most straightforward fashion, approaching me with hopeful hands outstretched and asking if he could embrace my thigh so as to appreciate how much was just loose flesh. I told him that wasn’t happening, and he then offered me the same privilege, so I could tell him what the difference was. No dice there, either, but it did occur to me that it was just as well my co-workers were just a holler down the hall—just in case.

But Troy was just testing boundaries, which I’m used to from our community members, and we went out with his coffee and my knitting. (I don’t go anywhere without my knitting if I think I’ll have to sit still for more than five minutes.) So Troy talked to me, and I tried to follow along, with him having me repeat back verbatim what had come out of his mouth, and both of us laughing: Whatever I had heard had not been the impulse of Troy’s brain; it’s unsurprising that sometimes he talks of himself as only borrowing Troy’s body.

Luckily, I had my knitting, in which I make things out of sheep fur, imposing order onto the chaotic universe. It calms me down and centers me—some people smoke, but I knit. No great shakes—we’re talking an average of a sock a month—but it anchors me, and lets me focus on things like talking to Troy, and sometimes the much harder task of talking to myself.

“It’s OK,” I said fairly early on. But he transfixed me with a sharp-nailed fingershake.

“It’s not OK,” he declared. And I felt like an ass: How would I feel if my brain pulled that sheep on me? Not OK, that’s how. But Troy carries it with an abundant sense of humor, and what I must call grace, meaning both a rough sort of etiquette and what some would call a gift from God.

Troy called my attention to the embarrassing fact that I say, “It’s OK” a lot. I hadn’t ever thought about it before, but I seem to have a pattern of needing to reassure people, possibly because my trauma survivor brain sees the world as a dark and scary place.

Hmm. That’s not OK.

Bending the Elbow


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Well, gosh. Something new has gone amiss with my body, and I don’t quite know what to do about it. But my neurologist does, and that’s something. And they caught it early enough, I gather, and that’s something else.

Several months ago, I noticed that the last two fingers on my right hand (ring and pinky) were ever-so-slightly numb and tingly. As in always. Permanently. No matter what I was doing. “Hmm,” I thought. “There are Things that start by eating away at the outside, like a kid with a giant cookie. I should look into this.” So eventually I did, and eventually they saw me, and this morning I went in and had my doc use me as a pincushion and zap me with a teeny little cattle prod. (Remember that dead frog in Biology? Yep. You’re there.) The zapping ranges from interesting (skinny areas) to somewhat painful (fatter areas which require more juice to reach their target), but the test doesn’t take long, so I survived. The general hmm and I suspected as much thing added to my main hypothesis, which was that I was imagining it. The numbness is very slight, after all.

However, I learned to my dismay that I have a rather nasty case of something called ulnar nerve compression, or cubital tunnel syndrome. (Neither of these is catchy enough to warrant a $60 elbow brace. Just sayin’.) Between computer usage and art, I keep my elbow bent most of the day, and it is mushing down on the nerve. Eventually this will lead to (seriously here for a moment) my losing motor control of the hand. So yeah, something’s got to give.

There’s the brace, and there’s ulnar nerve transposition surgery, which I’m being referred to for a consultation at this point. From the medicos’ POV this sounds and looks (thank you, Interwebs) scarier than it really is, so I’m not fretting about that, especially as the neuro is on the fence about whether I’m a candidate yet.

(I looked at standing desks, and none of them look like they’d fit my sprawling two monitor lifestyle, to say nothing of their devouring my bank account. [Besides, I’m on Zoom for twelve hours a week.] Nix on that, then.)

Rather, I will have to try to change my behaviors, and as we all know from dieting and jogging, this is the rub. I’m typing this at arms’ length, with the offending elbow on the cushy thing, instead of my usual posture of being choked up on the desk with the edge cutting into that very spot. The brace is arriving today and will be my faithful little friend for the foreseeable future, so I get to see life left-handed. But not forever—and I am oh-so-grateful that this was caught in time.

It’s Not Over Yet


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Friday afternoon: That’s the most important piece of info. Vaccines are all very well, but the biggest tool in humanity’s cupboard has always been cooperation, which we’re running low on, it seems. That said, I got Shot #2 (Moderna) this morning.

And . . . I feel weird. Not physically (yet), but it’s in that bailiwick: I am dreading the vaunted occasional side-effects. Not because I’m a wuss about discomfort (I had food poisoning yesterday morning, as a matter of fact) but because I hate the unknown and having something hanging over my head. This shot has been hanging over my head for a solid month now, and I’m glad at least that part is done and over with.

But part of the weird is that I feel like a small part of History now: I have joined the Herd.

For those who are wondering: No, the injection itself doesn’t hurt, but then my nurse mentioned she more usually works with neonatals, so YMMV. And I got vaccinated a stage “ahead” of my particular class because I work in health care. And, no, nobody gets to pick Pfizer vs. Moderna.

Saturday morning: I feel a little more tired than usual, but if I hadn’t had the shot yesterday, I’d put it down to the fibro. Tempest in a teapot. Not even sleepy, but then I don’t do sleepy unless it’s past my bedtime.

Now that all my co-workers are vaccinated, we’re hoping we can open up our RLC as soon as Baker gives the OK. (We are in a building run by the Department of Mental Health.)

Bottom line: Go get the damned shots, as soon as you can. I’m tired of not schmoozing in restaurants, not going to the movies, and other such human-animal filled niceties. We can beat this, Homo sapiens. We just have to work together from a distance.

That Place You Hate to Hurt


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Yeah, that one.

I have injured a small piece of my body, and I am very unhappy about it. It seems to have thrown everything off, and the punishment does not fit the crime.

Think about them for a moment, the small lumpy bits. They stick out and get caught on things. Or else they’re a passageway from Point A to Point B. Maybe they get ambitions of grandeur, like when your earlobes get those tiny cysts that feel like lentils of pure pain. Whatever. We’ve all got them, we all stub, overexert, and endanger them on a weekly, if not daily, basis. It’s their job. Somebody had to be the toe on the end; them’s the breaks.

But how then, I ask you, do they then turn into such divas? I’m always reminded of those useful homunculi illustrating the relative intensity of the nerves, although right now I’d say they’re wrong, because my small body part is carrying the rest of me along in a wagon.

So I sit here, alternately trying to ignore the discomfort or to acknowledge and embrace it, occasionally flexing my owie in experimentation, and in general letting it harsh my mellow. I find that the “acknowledge and embrace” school has some pointers: When I concentrate on the actual pain, it seems to pull in its snaky tendrils of domination and once more become just one of the little guys.  An abused, underappreciated little guy, now in rebellion.

However, I have meditating to do and a ferret to exercise. (When you are mindful, the two are not exclusive.) Come along, wee wound, dry your eyes. Human consciousness 1, somatic distraction 0! Woohoo for the home team!

Or maybe my fibro meds are starting to hit. Whatever; I’ll take it. Wouldn’t you?

Greetings from Gaia


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To save you from having to read the preceding post (although feel free): I opted to use part of my stimulus $$ to replace my old computer Merlin with new baby Gaia, and had to clone his hard drive in preparation. And cue diabolical laughter . . . now!

Merlin died. As in before Gaia arrived. As in the day after I did the clone. Those of us who don’t believe in coincidence are all nodding our heads.

It took Gaia a week to traverse 45 minutes worth of Colorado, which I spent trying really hard not to curse at Amazon and the USPS. Meanwhile, I was propped up in my tiny studio on my tablet, which has 2/3 the memory of my phone. (Literally. 2GB. I don’t know how the little darlin’ crosses the street by itself.) Had to Zoom through my phone for audio. It was . . . stressful, and I credit Insight Timer with teaching me that I could meditate on my own terms, because this week, already in quarantine, could have been Really Bad.

But she came! At last! Made in Germany, according to the sticker–am I alone in thinking this a bit odd? I must be; Lord knows das Deutsch have mastered engineering from cars to pencil sharpeners. She wasn’t *quite* the computer I thought I bought–lots of space for an additional couple of drives. If I’d known this, I wouldn’t have bothered with the cloning or the hasty cloud backup I’d also done . . . right before Merlin dropped deader than Jacob Marley. Let’s hear it for paranoia and ignorance!

Her HDMI port isn’t connected to anything (what the sheep??) so the monitor is on VGA, but these are first-world problems. Gaia is fast and silent, a veritable ninja compared to the lumbering Merlin. Of course, all my cookies are gone, but seeing as I also had my debit card expire last month, I have to re-enter a lot of data everywhere as it is. Moving on.

So I plugged in the external drive and . . . nothing. Downloaded the software. Nothing. My son tried, and discovered that a-a-a-all the data was gone. Poof. We still don’t know what happened. If I hadn’t been a canny old person with no trust in technology, having known technology when it was still teething, and thus backed up my essential data onto Google Drive, all my writing would be GONE. I would probably be in the hospital if that had happened, because I’ve been loosey-goosey about backups.

Currently I am still moving into Gaia, and enjoying such fluff as being able to greenscreen in Zoom at last. Merlin’s hard drive is plugged into my son’s machine because we want to troubleshoot a bit, but it’s not talking to anybody right now. We’re waiting for the geek to advise us as to the next step.

Oh yeah, the casual games: Had to re-download and restart them. Not so bad; I guess the journey is worth more than I had credited.