Category Archives: CFS – living and writing with ME/CFS/CFIDS

Coping with the experience of having life options limited; methods of managing time, energy, brain fog, and pain; how it has changed me.

Write a good book, they said

ALL STORIES ARE ABOUT LOVE

Humans are born needing love to survive – ‘failure to thrive’ may even be a cause of death when there is not enough love, in the form of feeding, holding, keeping warm, for an infant to want to live.

If that love isn’t present ‘enough’ by a certain age, it may never be recovered. Adults who have survived have significant problems. The Romanian children kept in orphanages and later adopted often were incapable of attaching to their new parents, parent who were not prepared to deal with them and their special needs.

Distinguishing between a Romance and a mainstream love story

like Pride’s Children is critical for my advertising, and it is something I still have a very hard time with.

Romance readers do not like Pride’s Children.

The negative reviews I have come from people whose expectations were not met.

And that’s my fault – because something I did caused them to EXPECT a Romance.

Romance readers have very clear ideas of what they want:

  • a relationship between TWO people
  • relatively short books
  • more of the same only different – from the same author
  • an HEA (happily ever after) or at least HFN (happy for now) endings
  • and in some cases, a form of point of view that alternates, in the same scene, between the points of view of the two characters
  • covers which indicate the kind of Romance enclosed within, from chaste to steamy
  • recommendations from Romance websites

There are many variations and compilations, but those are the basics from what I can discern.

I wish I wrote Romance – it is in some ways much easier to signal what a book is, and to market.

There is also a huge amount of competition!

A mainstream love story is a different beast

Even though Gone With the Wind is often listed as a Romance (and ‘Romance’ is what all novels used to be designated), it is not: no happy ending, not even a HFN. NOT a relationship between two people – Ashley Wilkes is in the middle for most of the book. And no head-hopping: the point of view is firmly locked on Scarlett for the whole story, but in a limited, not very intimate, omniscient way.

I’d call GWTW a mainstream love story, even a fairly literary one.

And I think that is the key to its enduring success.

At the end, we ache for Scarlett, for ‘tomorrow is another day,’ for her transformation, for her future – which made it irresistible for the Margaret Mitchell estate to allow a writer to take the story further.

Unfortunately, they picked a Romance writer, which I believe was the wrong choice, and didn’t buy.

But the marketing… with the book’s fame, they could market it any way they wanted.

I don’t have that fame.

Traditional publishers might have known how to market Pride’s Children

Many things kept me from submitting Pride’s Children to an agent, trying to find a traditional publisher:

  • I’m deathly slow
  • Disability is handled in the story – at the time I was nearing a finish, disability only got lip service while being sort of categorized with ‘diversity’
  • I’m pathologically stubborn
  • I have believed the indie self-published path is better for a long time now
  • I dislike not having everything in my control
  • I was sure I would be getting, “Nice – but not for us right now” responses, as traditional publishers went with things they were more certain they could sell
  • I knew I would be asked to change certain elements of the story to something more palatable
  • I don’t like their royalty structure
  • If I break out, I want it to be because of what I did, and not for someone else to be able to claim the credit.

But not going traditional leaves me in charge of marketing and publicity.

And most indies do not write mainstream literary fiction!

So there is little path to follow, and that among mostly indie historical novelists; though if I end up taking as long as I seem to be, ‘historical’ may fit me. Depends on whether it is 25 or 50 years since the events happened, as 2005/6 is the timeframe. I’ll probably make 25 by the time I finish the third volume, but probably not be around for 50.

I am gleaning information and ideas from many sites and groups

None of them really appropriate.

I need to figure out how to ‘go viral,’ to capture the zeitgeist, to become popular.

While still having zero energy, fighting my body daily to get some writing brain time, and trying to blaze a trail.

I have ideas. I have sources and places to put ads (some of the previous ones were expensive disastrous messes). I get cannier and sneakier and more educated and more focused with each thing I try.

But it hasn’t been, and won’t be, easy.

The last attempt led me to USTO.gov (copyrights and trademarks and such) to make sure a phrase I will trademark wasn’t being used already.

It isn’t.

But the cost is not zero, and the category I fit in right now – intent-to-use – won’t last long enough for my purposes, so I’m not revealing it until I’m ready to use it. Meanwhile, I will be on tenterhooks.

Which brings me full circle:

‘Write a good book,’ they said.

But never said that part of that may make it extremely hard to sell.

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As usual, comments are very welcome – and I love getting suggestions.

Also, my thanks to Stencil for their graphics software and ability to have a free account for up to ten images a month.

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Taming brain fog and the vagal nerve wave

Surfers

WORKING AGAINST THE INEVITABLE IS EXHAUSTING

The instructions for getting to shore safely when caught in a riptide are to let the current take you where it will, while swimming slowly across, until you’re out of its grasp.

If you try anything like fighting the current, you will drown after you become exhausted, unless one of those nice fit lifeguards sees you and gets to you in time.

Because the current is stronger than you are – by many orders of magnitude.

What is brain fog?

If you have to ask, you haven’t had it. I’m glad for you.

It is feeling, within your own skull, that you just can’t think.

That your brain is in there somewhere, maybe, but you can’t get to it. Other names are chemobrain, fibrobrain, stupor, …

No matter what you seem to try, you can’t get out of the fog – and you can’t think.

It can be caused by illness. By medication. By sleep deprivation. By eating or drinking too much or the wrong thing.

It is a huge part of life with ME/CFS (myalgic encephalomielitis/chronic fatigue syndrome).

It robs you of hours of time.

Healthy people may have ways of exercising through it. Some people can take a stimulant like caffeine to focus and wake up, or ADHD meds.

Rest SHOULD help, but for people like me is often not restorative.

And what is this thing you’re calling a vagal wave?

The vagus nerve enervates much of your body, from the spinal column up to your brain, and out to your limbs. Including innards you don’t have conscious control over, such as your digestive system.

It covers so much territory, it’s hard to know exactly where the sensations are coming from sometimes.

I get periods of time, long ones, when it feels like a wave motion is going on in my body, and all I can do is sit there and let it do its thing. Sometimes painful (the meds after stents caused a horrible case of constant waves of pain in the gut), sometimes not.

When I sit in front of the computer screen, ready to write or focus or think, but the waves are going, all I can do is to grit my teeth and live through them, hour upon hour.

But I’m a problem solver by nature and training

and I finally was able to pay enough attention to the combination of not being able to think, and feeling as if I was in an aquarium (the modern kind with waves).

Data is essential for problem solving, both to identify what’s going on, and then, when you come up with solutions, to see if you’ve managed to change something.

And I finally collected enough data (over months of not being able to write very often), to see some correlations.

I have to eat. We all do. And I can’t think starving, so I can’t postpone the eating TOO much, plus I seem to get these shaky periods of low blood sugar if I put off eating too long, and then it’s an emergency to eat something.

I don’t eat many carbs, so it baffled me – sugar messes with my brain, and the day after eating sugar there’s no way any thinking is going to happen. I don’t even bother trying any more.

But I FINALLY noticed

that 10-30 minutes after I EAT, the waves start, and the brain fog.

I used to try to push through – and the only result of that was to spend hours in that state.

I tried taking naps when I got tired – but they weren’t organized or planned, and the effects didn’t seem to correlate with anything; it was just something I HAD to do.

And I finally figured it out:

My damaged and severely limited energy metabolism doesn’t have enough at any given time to do BOTH: keep me awake and functioning (or even get there), and digesting my food.

It took some tweaking, but I have found a system which takes advantage of my need for napping and my need for food, and times them so that they don’t conflict.

So now I run a time-share

I get up, drink First Diet Coke, and try to get a bit of writing or organizing done before I eat anything.

When hunger tends to shut me down – anywhere from a few minutes to a couple of hours later – I prepare for the next phase: I eat something (mostly protein), but I start getting ready for the changeover from thinking to digesting. I take notes so I can pick up easily when I come back.

And when I feel the waves starting, I get into my jammies, pull the shades, turn the lights off and add an eyemask to block external stimuli, and get in bed.

I set a timer for 35 minutes.

If the wave approach is gentle, I’ll do a quick range-of-motion set, a couple of minutes worth.

If the approach is sudden and severe, I just crash. I used to fear this part – now I just realize I dragged my feet too much.

Lights out. Body temperature drops abruptly (ergo, the jammies). Sometimes deep sleep, sometimes a coma-like state.

The digestive part of the vagus nerve’s control takes over – and I don’t get in its way. No reading. No TV. NO COMPUTER. No trying to think, or push through it, or ignore it.

Just give in.

And when the alarm goes off

I get up, stretch a bit. Get some water, and Second Coke, and NO FOOD.

And within minutes I’m functional again (inasmuch as I’m ever functional), and I can usually work/write for an hour or two until I’ve used up my nap energy, and need food again.

I try not to do Third Coke after Second Nap – that’s too much caffeine for the day (each can is about 45mg of caffeine – peanuts compared with a cup of coffee or an energy drink, but it’s about as much as I can tolerate at a time without getting scarily shaky).

What I should do is not drink First Coke until after First Nap, but that has other physical problems related to it that I prefer not to go into here.

For years I’ve taken 3-5 of these 35 minute naps every day.

And I ALWAYS wake up in a better state than I laid down in.

But this is the first time I’ve coordinated all the pieces, and added the realization that DIGESTION TAKES PHYSICAL ENERGY.

And that my energy supplies are so low, I can’t afford to have the processes of thinking and starting digestion going at the same time.

I’ve been testing this system for the past week

I’m only taking 1-2 naps most days – probably because they are at the right time.

Eating is the trigger – every time. I hadn’t realized how strong it is as a trigger. Though it makes perfect sense: you eat, your body starts digestion. Duh!

Not having a good night’s sleep can cost me the first workable period, and, on a bad sleep night, I may not be able to recover the following day at all.

If I exercise at all – and right now we’re only allowed to use the pool in a predetermined half-hour slot during the 8-11am time – even if it’s the gentlest possible stretching in water – most or all of the rest of the day is shot, because I can’t make up that energy. So the two swim days a week are going to be non-writing days, most likely. Evening would work, but the county rules for the pandemic require a staff person supervising, and the facility is only providing that on weekdays in the morning. Before, I used the pool alone whenever I wanted to, and it was usually in the late afternoon or evening.

If I try to defeat the system and push through, all I do is foul everything up, and get neither rest nor functionality nor good digestion. Timing is critical, as is diversion of energy from one stream to the other.

I might have figured it out sooner

if I had a readout somewhere on my body of both energy usage and remaining stored energy.

I’ve been fighting this battle for years, but I never got quite the data until I noticed the crash after eating – and thought about it. And then it made sense: I’m broken, but I still have some small amount of control.

What I need was all this pandemic isolation and time, and the frustration of the crashes, and some insight that I still don’t know where I got. I have time – lots of it – but was not making much progress in writing NETHERWORLD, except what felt like randomly.

And when the brain was there, I could write for a while – and then it would go.

The PRINCIPLE is the key

I have only enough energy for one process at a time.

I’m lucky I do. I think aging takes its toll, too, and I’m probably producing less energy, total, every year.

Many people with what I have don’t have even this amount to work with – and spend their days playing catch up, with task after basic task barely getting done.

I’ve written this in the hopes of saving someone else with this kind of severe energy deficiency management the years of figuring out how to make the most of their energy creation and storage capacity.

Please let me know if this is of any use.

And pray it makes me a faster writer – I really do well with my brain on!


My thanks to Stencil for the capacity to make interesting images for these posts. Give them your business if you need to produce this kind of image – they have lots more stuff available than the free accounts use.


Using Autocrit to combat combat fatigue

IF YOU DO YOUR OWN EDITING, BE MERCILESS

Despite the recommendations of every editor on the planet, some of us do our own*.

Editing’s no different from any of the other tasks a self-publisher tackles:

  • You are not going to do it perfectly
  • It is a skill – and you are not born with it
  • Learning has many steps
  • There are books which will teach you (or you can take a class)
  • It takes time to do it well
  • It is not inexpensive – if you count your time
  • The professionals started somewhere
  • The results are there for everyone to see
  • No matter what you do, someone will criticize you
  • There are objective standards – but not everyone agrees what they are
  • There is great satisfaction in doing it yourself

Why do your own editing?

Because, in the long run, everything you learn makes you a better writer. Because you can. Because it is always available, on your own time schedule, at your own price (but don’t forget that the time you spend editing might be better spent writing). Because you can’t afford what a good editor costs, and a bad one is useless.

In my case, because I am incapable of interacting with someone else about my own work. Call it a feature – or a bug.

How to have an editing program assist you

After I have almost everything written, polished, listened to, and in what I consider final form, I run it through AutoCrit – and all of the COUNTING it does for me:

  • Duplicate words.
  • Overused words.
  • Two-, three-, and four-word phrases repeated (ouch – unless deliberate).
  • Unusual words.
  • Cliches.
  • Generic words.
  • My own personal word list.
  • Adverbs.

Each and every one of these flagged items gets put through a wringer: Context. Intent. The possibility of synonyms, and a consideration of nuance. Number of repetitions. Whether the repetition is by accident or design.

In other words, everything that has bitten me before.

What I don’t let it ‘help’ me with

Anything else.

Why? Because I don’t trust its judgment on ‘passive voice,’ or ‘subject verb agreement,’ or ‘tense.’ Or ‘readability.’

I have a set, but complex, style. Autocrit doesn’t see italics, for example, but I signal to the reader that something is a direct thought by changing to first person and putting the text in italics. So if you read:

There is no way I’m telling him that.

you’ll know it’s a more intense thought, in those exact words, than general internal monologue:

She wasn’t going to tell him that.

It’s too complicated for an automatic program.

But the counting alone is an amazing help for me

When and where I need it.

This is my reason for having a lifetime membership – my brain is tired more than lazy all the time due to chronic illness and disability, so I let it serve up the most convenient word WHEN WRITING. But I’m not going to let first words stand – not without a raze-to-the-ground fight.

Because my readers deserve the best I can provide on the LANGUAGE side of the writing.

Self-editing with a program is a tool

It takes a fair amount of time per scene, but I think of it as the best investment of that time I can make, because the final product is improved in so many ways. I look for strong verbs instead of verb + adverb combinations, more precise nouns instead of common nouns, and also places where I can reinforce a motif or thread I want to keep.

And I don’t have to count or do the time-consuming searches because Autocrit is merciless.

Last tip

After the scene is polished through this process, I put it through several of the steps one final time – because I have had the experience of working on synonyms and nuance, and finding out that to reduce the count of one way of saying things, I have increased the count of another!

*Adapted from an online comment – you may have seen some of this material before.

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Do you use an editing program to improve your own writing?

How?

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Forcing my body to obey me

Sunset picture from my balcony, pinks and blues
Sunset past the Fall Equinox

WRITING FICTION REQUIRES THE BEST I’VE GOT

And when I don’t have it, the fiction doesn’t done.

It’s frustrating.

It’s also my life, and, if nothing else, that life has given me Pride’s Children, and so I forgive it.

Writing posts that reveal

I have two almost complete posts:

Laying out my writing wares for the passersby

and

Tagline, logline, pitch are the hardest writing ever

both of which are my brain kicking up something I’ve been resisting: serializing Pride’s Children NETHERWORLD.

Why? Because it is half finished, and I only had 40 finished scenes when I started serializing PURGATORY, and I have well over that for this book.

These posts are pending until I make the big decisions.

The first book was serialized several places, a new finished scene every Tuesday for two years. Read that again, and realize that, for someone as physically and mentally challenged as I am, that kind of commitment – which I fulfilled – is almost the same as spitting into the wind.

I honestly don’t know if it helped me write, or helped me focus. But I do know I finished.

At the time I hadn’t published anything else, so there was no sense of bravado – no one would probably care if I didn’t finish the story, the scenes didn’t get published on schedule, or I disappeared into the unpublished ether as a debut author.

Other publishing tasks got done simultaneously

During that same time, I learned Pixelmator and worked with J.M. Ney-Grimm, who kindly mentored me in producing my cover, a process which took a whole summer.

And I learned all the editing and formatting and proofing and layout tasks needed to produce an ebook and a print version. ALL. Seems a little foolhardy looking back – a rank amateur attempting a story which will be as long as GWTW when I’ve finished the third, as yet unnamed, volume.

Many of these tasks turned out to be easier for me to teach myself, at my own slow pace, than to find someone and communicate with them to get what I needed. For someone with a damaged brain, explaining is as hard as doing, and a LOT more expensive, so I just plowed through.

It should be easier the second time around

But it’s not. It’s harder – because there are expectations. And because the second book in a trilogy has to kick everything up a level – loosening up or staying flat aren’t options.

And, never fear, the kicks have been planned into the structure – but they are also harder to write.

And I’m older, and have been damaged longer

And there’s a pandemic going on, and a heated election, and a world going up in a different kind of flames.

The body’s older. The brain’s older than when I started this particular story – in 2000. If I weren’t so slow, I would have been long finished by now. GWTW took Margaret Mitchell ten years; I’ve already been at this twenty.

Serializing is a promise

But the idea of serializing again, only now with possibly more readers because they’ve read PURGATORY, excites me.

That, and developing the website for the books. (I have found a marvelous little book called Making Your Website Work: 100 Copy & Design Tweaks for Smart Business Owners, by Gill Andrews, just packed with good ideas I can’t wait to try.)

And publishing and making available as a reader magnet the Pride’s Children prequel short story, Too Late, which was a featured story on Wattpad, all this is exciting.

And I’ll put PURGATORY on sale periodically via Kindle Countdown, so that anyone reading something they like on the prideschildren.com website serialization can get PURGATORY, read and catch up, and enjoy knowing what happened before.

Just in case something happens to me

This is something any author involved in a several-book project right now has to take into account: not making it.

Many a series out there has been ended prematurely when the author clocks out for one reason or another, and Covid-19 is very hard on people in my age and disability cohort. So I will do a ‘Pride’s Children finish file,’ where I flesh out, just a bit, the structure of the remainder of the story, and leave instructions with my literary executor to provide the file to those who have signed up to follow the serial. Not as good as finishing, but, in my mind, a whole lot better than leaving it up to the readers’ imaginations.

Coming full circle to the title of this post

Forcing my body to obey me.

I am in the middle of a great experiment to work with the many problems, and use some of the features of a medication (ldn, low-dose naltrexone) tweak, to have more usable brain time every day.

I’m already getting a couple of pool dips, and possibly a trike ride – to keep things functioning – every week.

And I’m using the data I record about how things go to see if I can’t figure out a more usable schedule that caters to my dysfunctionalities instead of fighting them. For some reason (recent successes?), I feel I might be able to do that now.

I won’t start serializing until I’m sure, but it’s been my dream since we moved to USE the increased time I have here at URC, and during the pandemic when the social life is restricted, to finish the books, and then take a break from the writing to market more extensively.

Time’s passing, time’s awasting.

Cross your fingers for me!

A brief survey

  • If you had a favorite book coming out with the same process that I use, a finished scene at a time, would you read it that way?
  • Some readers won’t tackle something that is unfinished; but would the ‘finish file’ concept reassure you?
  • If you’re a writer, have you had any experience with serializing – and how did it go?

I would love to have your answers in the comments.


Locked down with the virus at the door

STRESSORS TO THE RIGHT OF US, STRESSORS TO THE LEFT

If you live in a retirement community, you are surrounded by vulnerable people – it is the nature of the beast.

Once you move here, they become your friends and neighbors, and you care what happens to them, to the facility, and to yourself in the place you have chosen for your ‘forever home.’

When you get the WEEKLY notice of the results of testing (the whole staff is now being tested once a week):

  1. A private duty aide tested positive.
    • We received results on 8/20.
    • We have not identified prolonged direct exposure to other staff members.
    • This individual provided care for 5 residents. Each of these individuals has been contacted and will be tested. None of these 5 residents are believed to have had any contact with other residents or staff.

and you realize that those in charge are thinking that they will have to continue ‘at least two more weeks as a result of the positive case,’ you also realize they are living in a dream world where, without treatment, cure, or vaccine, they think it’s going to get better – OR they’re saying that because they think WE might feel better – you realize you are living in a situation that you have no control over, and it will continue for a very long time to come.

Everyone is under stress ALL the time

We took the not-fun stress of getting older, old enough to move into a place where you are no longer responsible for a house and yard, and moved.

We haven’t recovered, not really, from the move.

We have never quite completely moved in – the assistant we were hiring is not permitted to come in and help because she is not considered ‘essential.’

The ‘private duty aides’ ARE essential – but that doesn’t mean they don’t have a life, a home, kids, families – and go home to them every day.

We live in a web of interconnections

The reason we are here is because we estimate that some point in the future we will need the help the aides provide, and it is much easier to do it through a facility than one of us caring for the other.

Our kids will probably never all live close, and we made this move so they wouldn’t become caretakers or even arrangers of care, because, with all the good will in the world, it is a humongous job to take care of parents.

None of us planned for such a far-reaching and deadly pandemic.

Je Ne Regrette Rien – moving was the right decision.

But we were going to move, dump the house and responsibilities, and travel – from a home base which we could just turn the key on and forget.

We’re in the age group where, if we take reasonable care, we could expect to live another 30 years. I want to go home to Mexico to visit my family. I want to find a way to do some gentle travel to Europe. If I ever get a bit better, I would love to ski again.

Or hike. Or camp (even in an RV instead of a tent).

With the kids, I want to do a family vacation every year, so they stay connected with us and with each other, and we have fun.

There has been a kink in the plans.

I struggle every day to write, while at the same time fully realizing that stress kills, and there is too much on everyone right now.

Here is a stress inventory.

It is good to take one periodically, to see if things are under control, and if they are getting better or worse.

IIRC, inventory numbers over 300 are practically a direct warning of major illness coming soon, and lower numbers are not ignorable.

I don’t dare take the inventory right now.

Instead, I am taking every possible relaxation approach to dealing with what I know is there.

An important part of dealing with stress is simply acknowledging it

And looking for a time in the (we hope near) future when it will be less.

Which is what we were aiming for, until the latest notice from the county which put the kibosh on using the outdoor pool (which was about to go from 3 to 5 days a week) – because of a new menace, FIRES!

And realizing that others have it far worse than we do.

So, when it gets stressful, I blog – and dump some of it.

Records, records, records

I’m also recording for posterity, as these post are part of the ‘accidental autobiography’ I’m creating by writing bits and pieces in a series of places: emails to friends, notes on the computer, annotations in the Production File I have open for every scene I write, blog posts, and the unlikely storage in social media.

I just requested a current copy of my Facebook information – and will store it on the external hard drive.

Wattpad deleted the forums – and did not give us a chance to do that – so I lost all my forum activity.

I did download everything I created for my Patreon account – some of which may be used again down the line if I serialize the second book, NETHERWORLD.

And I also realize that this is of importance to no one but myself.

And remind myself that I need to create a document for our children which summarizes the information about the family that they might like to have when we’re gone.

ASK YOURSELF what you need to do to reduce stress – and what you need to record for the future – and do it one of these days. Tell us in the comments!

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Laying out my writing wares for the passersby

I’m planning to revise the prideschildren.com site, and one of the things I’m mulling over is how does a fiction writer provide value for a visitor to her books’ site?

My personal blog here is all over the map, by design – the readers I hope to attract to buy and read Pride’s Children PURGATORY (Book 1), the prequel short story, and, as they are available, Books 2 and 3, NETHERWORLD and…? are not necessarily interested in my opinions and experiences as an recent inhabitant of a Continuing Care Retirement Community (CCRC).

What do I hope for from readers of my fiction who get to the other site, say, from the link in the back of Book 1, or from a recommendation from a friend?

Without answering these questions, I have no hope of supplying these readers with something they value, preferably something they NEED.

What do my readers NOT need?

I decided to visit the Amazon reviews of several novels that could realistically be called ‘comps’ – books that by their general complexity, genre (contemporary mainstream), style (reasonably realistic), length (big fat books), and language (literary) are similar to Pride’s Children.

There I’m going to check out the negative reviews, and found what made readers unhappy. I’ll ignore the reviews which are too general, and look for specific buzz-killers.

And then I’ll pull some quotes from my own reviews (many fewer, of course) that point out I don’t commit these sins. If true.

Here’s the list, paraphrased for conciseness:

  • unbelievable due insufficient character development
  • The sentences, paragraphs, passages… all just SO incredibly long
  • I got halfway through and I felt as if nothing happened
  • There was not a single character that I cared about
  • The dishonesty of most characters was so out of my comfort level
  • two of the least interesting characters I’ve ever encountered in literature
  • digs in to all the nasty-ness entailed in living a life of degrading self abuse via abuse of various substances
  • I made it to page 354 and then skipped, skipped, skipped
  • a blow-by-blow, second-by-second rendering of the narrator’s life
  • I thought it would never end
  • I simply didn’t enjoy the story enough to appreciate the pages and pages about the meaning of life.
  • Lacks: an interesting narrative, a plot, a satisfying ending
  • pretentious, long winded, tiresome, tepid novel
  • unedited and rambling and somehow that’s supposed to make it literary
  • why did it take [almost 800] pages to tell that story
  • filled with so many ludicrous plot holes that it’s just not something I can stomach
  • a descent into a bottomless well of self-pity, gloom, and urban angst
  • the punctuation and structure of sentences is horrid to the point that it’s extremely difficult, if not impossible, to follow the thought process of the author
  • there are missing words, wrong words and misspelled words throughout the book
  • goes on about [X or Y topics] too long
  • … talks about how precarious [character’s] finances are and yet they live in a [very fancy place], take cabs everywhere and seem to eat out all the time.
  • …why wasn’t author consistent?
  • illogical transportation
  • The character’s conversations were completely unbelievable. He’s supposed to be a X, give him the voice, thoughts and mannerisms of X!
  • Author seemed to be grandstanding about how much she knows about Z.
  • I find the reference … overly coy. Just name it, or make up a name.
  • [Plot point] was excruciatingly long (not in a you-are-there way; in a boring and overly-lengthy way) and repetitive. Author could have accomplished so much more with so much less.
  • Author overused words that tend to jump out at the reader like “loitering” and “grappling.” Does author not own a Thesaurus? It would be so easy to substitute synonyms…

From my reviewers (completely unprompted – I didn’t know these readers when I wrote PC):

  • I just read PC in 10 hours straight, and I am speechless.
  • …you have managed the best instance of “the story is not finished, but this segment of it feels finished” that I have ever encountered.
  • just wanted to say its VERY GOOD, and what an ironic and sharp eye you have for le mot juste, and the silence pregnant. Very enjoyable, no sign of the damaged mind but I resonate strongly with your main character
  • I had meant to read up on it ages ago and just never did, so I glommed everything last week. Now i’m like, damn it, i have to WAIT for more?! Noooooooooooooooo
    So just keep it up. No pressure of adoring fans or anything.
  • Very character-driven, very slow burn, very subtle. I loved it. The characters are rich and real. The scenes build upon one another with clear purpose. The writing is exquisitely careful.
  • I read chapter 1 out of curiosity, chapter 2 out of interest; the rest of the story will keep me up all night. Beautiful.
  • I put it off because it didn’t really seem like my kind of story. But I loved it. You did a great job.
  • Your writing puts me in mind of the classics only in modern era. Those are the stories that will live forever. They scream for detail and need the long way around.
  • Pride’s Children has helped me to look inside myself and see many things I need to see and deal with. I have never read a work of fiction that has touched me so powerfully! I love it and will be rereading many times. You did not cause any pain .
    You gave me increased awareness of myself.

  • Just finished reading and posted a review on Amazon. I loved it! I’m impressed by the infinite care that you put into it, the choice of words (so sensitive!) and the absolute lack of typos, that’s something of a record!

And more.

Is tooting your own horn a good or a bad thing?

In the indie writer world, if the author doesn’t do it, it doesn’t happen.

I didn’t write the words in the section above – I somehow inspired them. I have permission from their authors to use them any way I want.

It still feels like something my mother would disapprove of, as she reared me to be a proper woman so many years ago, in Mexico, in the 60s – with a style and morality more like the US in the 40s.

Modesty is a virtue, but women have come a long way from that upbringing.

In any case, I plan to use both my reviewers words and my own published and pre-published words to reach the readers I want to attract.

It is my hope that if I can get the right readers to try – a few words, a few pages, a few chapters – that they will stick, and they will like what I have written for them.

Because I love having this effect on another human being.

Please join in with your pet peeve about writers or books – I’d love to read them!

And will try to avoid them.


 

Based on a prompt: Baby Egg

 

THIS ONE’S FOR MARIAN

She insisted I should finish it.

I decided to give myself a few more words than the 100-word limit of the Drabble – it takes time to shorten, and I’m in the middle of NETHERWORLD, but her prompt inspired me, and here it is:

BABY EGG

She went every day to visit the baby egg. Through its translucent shell, her first child grew peacefully, with her heart sound piped in, and a gentle periodic rocking to simulate her walking around the kitchen.

Protestors screamed outside the lab that it was unnatural.

But it had finally removed Eve’s curse: no birth. No stretching the body out of shape. No pause in the ability to work. No pain. No surrogates wanting to keep the babies they carried for others.

She’d have to be in town when the baby ripened, but, other than that, she couldn’t see why she wouldn’t bond perfectly well with her offspring – after all, adopted babies did fine, didn’t they? There was the oxytocin nasal spray, and the hormones for lactation, and the nanny to do all the changing of dirty diapers.

It should be a hoot to play with when she had some time.

Here’s Marian‘s prompt:

It’s a baby egg. The neighbors got chickens that lay teeny wee eggs and gave me some. I had tomatoes from the farmers market, so I made a marriage in heaven.

She has a cute picture of a very small egg in her hand.

For the record, this is the new ‘block editor’ for WordPress, and I hate it.

Any time you change things I was perfectly happy with, I resent the huge loss of time.

I no longer have any idea where the things I depended on have gone.

If it ain’t broke, don’t fix it.

They do realize some of us have damaged brains, right?

I have no idea how to access the media, or how to insert an image, or…

Pretty much sums up my life.

And I have no idea what this will look like, vertical-spacing-wise.

SIGH!

——————-

Tiny touch of normalcy in the middle of a pandemic

Schwinn Meridian Adult Tricycle, 26-inch wheels, rear storage basket,  Cherry - Walmart.com - Walmart.com

NORMAL FEELS GOOD, EVEN MASKED

Episode #1 – The Affair of the Tricycle Seat Repair

This isn’t my tricycle – mine is a mystery brand – but it is extremely similar. One of the things that was normal this past week was a trip to the Tinker’s Den, my first.

Here at URC, an early resident refused to move in unless he was allowed to bring his basement workshop and woodworking tools. So they accommodated him by building a room off the corner of the south underground garage, and named it the Tinker’s Den. That was 20 years ago, and the workshop is used by a variety of people doing projects.

Well, earlier in the week I finally took the trike seat off because something was wrong and it had way too much side movement, but I hadn’t been able to see what was wrong while it was attached.

When I got it upstairs, I figured out the where the seat was attached to the post, a nut had come off of a bolt, and the bolt was sitting diagonally at an odd angle, attaching nothing.

To make the story short, I called Tenney, the resident whose name is listed for the Den, and we spent an enjoyable if somewhat frustrating hour or so taking the seat apart to get at the bolt, finding a replacement one (the one on the trike must be metric, so our nut jar didn’t have a suitable replacement), and putting the whole back together – and having a nice chat as I helped.

I miss doing that in the basement of our New Jersey house, where I had a full workshop – and plenty of nuts and bolts in jars before we moved. Of course, there had been no need to use a workshop for two years here.


Episode #2: The Affair of the Head Shot

The other bit of normal life was another request of another resident: I have arranged to have an interview of me as a writer published on a blog, and the blogger kindly sent me a list of questions – and a request for a photo.

On her site, I saw that the photos of other authors were much better quality and definition than the snapshot cutouts I have normally used before (yes, I knew I’d have to do something about it some day, but when you’re indie, there are a lot of things on the list).

In any case, when we came to URC, Marion had done a very nice job with her very good camera of taking pictures for the Resident Directory, so I asked if she would take a few for me for the purpose of a head shot – and she kindly agreed.

We settled on Friday morning at 11 (I cannot guarantee being up and functional earlier, though I often am, and I didn’t want to have to call, bleary-eyed, and reschedule).

She had walked around a couple of days before at that time so as to find some good backdrops among the greenery, so we set off to take pictures, her walking (she’s 91), and me on Maggie2.

And spent about an hour using various pieces of greenery as backdrops – and then she put the twenty or so photos on a flash stick which I downloaded to my computer last night.

We were masked, and stayed the required 6 feet apart for most of the time, but talked as we went, and I am so grateful because we have no idea when real normal will return, and I was dreading the whole process (I don’t usually like my pictures), but quite a few of the ones she took are very good. She is amazing.

She was surprised that I want to do the photo editing myself, something I’m reasonably competent at – but I’m really not good at selfies, and an outside photo place is not in the cards right now.


Episode #3: The book blogger reads

And finally, I found out via Mention, where I set up a request that sends me an email when Pride’s Children PURGATORY is mentioned anywhere on the web, that a book blogger whose site Written Among the Stars I visit regularly (she does very good reviews) has started to read it, and her thoughts thus far are:

“This was another one that the writing style took me a little while to jump into to and I was a bit concerned that maybe the story just wasn’t for me. It didn’t take long though for me to catch up and really start to enjoy myself. I adore Andrew. He is quirky, funny, smarmy and just so much fun.”

You know how hard it can be to persuade someone to read something different – and all authors try to find sources for more reviews – so I am very happy that she persisted, and am looking forward to hear what she thinks of the whole.


Little things matter when you’ve been in quarantine a long time.

Please use the comments to tell your stories of what makes you feel normal right now!


 

How to torture your favorite writer

Graph from Kindle showing how many page reads Pride's Children has over a month

THIS IS OLD – BUT THE PRINCIPLE STANDS

I haven’t advertised in ages, because I haven’t figured out exactly how to do it when you write in a 1) smaller niche (mainstream love story), that is 2) usually NOT indie (and you write indie), and are 3) slow (so there won’t be another book for readers for a while longer).

As an expected result, sales are slow (but someone bought a paperback this month – Yay!).

And, under certain conditions, you can SEE a reader take your book out of KU and read a few pages (first yellow bar – around 10, maybe 11 if the next bar was right after midnight).

And then read a few pages every once in a while.

From a later graph and adding all the page reads (PC is just under 400 pages), I think the reader finished by May 19th.

Slow writers take our encouragement where we can get it

But it is amusing to watch a graph like this one (and the speeding up at the end) go by when you are doing your daily check.

And to decide what you’re going to assume about the reader (since you have no data but the few points on the graph, which you assume come from the same borrow) based on NO OTHER INFORMATION.

In this case, I assumed a busy life, and a few pages read at bedtime by someone who KNEW they had to get up in the morning to work. Fair enough?

READERS owe writers NOTHING

I will say that as many times as necessary.

Once the book is on the open market, buying – or borrowing from KU – is more than enough for a reader to give the writer.

At that point, we hope they will enjoy it.

Anything else, a rating, a review, a recommendation – is above and beyond, and a gift.

If a reader buys the paper book, we usually don’t even find out if they read it unless a review shows up (these can really make your day; the absence is just normal reader behavior, because few review).

Between the reader and the writer

This has been the contract (a one-way contract) almost forever: I will read.

Going to the next level of writing a fan letter was very rare, even in the olden days.

Doing anything else other than having a warm feeling for the experience (if that happens) nowadays is as rare.

When you see a book with many reviews, it is usually because the book sold many copies – and the usual percentage (tiny) of readers left their impression.

Occasionally, a very good (or very bad) book may solicit a higher percentage – meaning it hit readers in the gut.

Torture away

Writers don’t expect much feedback

Our readers are mostly not writers – they are the people we hope to serve entertainment to.

But it is possible (probably unconsciously) to torture your writer – by proving you can put the book down, over and over.

If you need to do that, please go ahead. It does require you borrow the book from Kindle Unlimited first – and then read it a tiny bit at a time.

Know that the torture is even better because Amazon pays authors not when the book is borrowed, but as the pages are read.

You’re welcome.


PS: I’m going through my files of draft posts I never finished to see if any still tickle my fancy. This one did.


 

Boosting acflory’s post The Swedish Experiment

Dr. Jon Tallinger whistleblower Youtube video https://www.youtube.com/watch?v=PuhJaelB8GI

[Video link]

DR. JON TOLLINGER BLOWS THE WHISTLE ON SWEDEN’S PLAN FOR COVID-19 ELDERLY PATIENTS

I don’t do this often, but this one seems very important to me.

I have been skeptical of the ‘Swedish Experiment,’ the official Swedish response to the covid-19 pandemic, because anyone who know about epidemiology and vaccines knows that ‘herd immunity’ requires a huge majority of the population to be immune (est. 80-90%).

Then herd immunity makes it unlikely (not impossible) for people to catch the virus from each other, because there are fewer people carrying the virus around.

From the beginning, they said they were relying on people distancing, wearing masks, and behaving like civilized adults, and that this would allow them to not have to shut down the economy.

My friend acflory, on her blog post on Meeka’s Mind, quotes from Dr. Tollinger’s Youtube video above:


The Swedish Experiment

I almost missed this interview in which Dr John Campbell talks to Swedish whistleblower, Dr Jon Tallinger. I was shocked. Then I went to Dr Tallinger’s Youtube channel and watched him tell the world the truth about the so-called Swedish experiment. In brief, it boils down to this:

  • Sweden didn’t expect Covid-19 to hit and hit hard,
  • the Swedish government did not have a plan for dealing with Covid-19,
  • once the virus hit, the plan became to ‘let it rip’ with minimal interference,
  • All the way from the top to local councils, the directive was to not treat Covid patients over 80, or the over-60’s if they had co-morbidities,
  • People from this vulnerable population were not to be sent to hospital if they presented with Covid-19 or Covid-19 like symptoms,
  • Instead, care homes and GPs were to administer palliative care only,
  • This palliative care included morphine to make the patients comfortable, but also to make them appear as if they were not suffering when family came to visit,
  • Morphine is contraindicated for people with respiratory diseases because it depresses their breathing. In other words, it speeds up the moment of death.
  • The people in this vulnerable population were not even to receive oxygen to help them breathe. Top health officials lied about this directive saying that administering oxygen outside of a hospital setting was too ‘dangerous’.
  • This is a lie with just enough truth in it to make it plausible to the public. A small number of people with certain kinds of respiratory problems shouldn’t be given oxygen, but almost all Covid-19 sufferers should. Remember Boris Johnson of the UK? When he was hospitalised with Covid-19, the press made a big point about how he needed oxygen but wasn’t sick enough to need a ventilator.
  • There has been a cover up at all levels of government, and the reason could be that health care for these unproductive members of the Swedish population is just too…expensive.

These damning accusations don’t begin until minute 8:30 because Dr Tallinger clearly fears he won’t be believed and because…this is his own country doing what amounts to involuntary euthanasia.

See the rest at Meeka’s Mind.


Palliative care that speeds death with morphine instead of supporting life with oxygen

is not palliative care, especially when, as above, it makes the patients docile and hides their desperate air hunger from the only people who protect them, their relatives who visit.

It is well known that the most important thing to a person in a care facility is relatives who visit to make sure the person is actually being cared for.

So this is a deliberate attempt to hide the true state of the person in care from the relatives who visit – and it is not going to be any better when those relatives aren’t even allowed to visit.

Oxygen would keep them alive – consuming resources; morphine will get rid of them.

Don’t listen to me – listen to Dr. Tolliver

who is appalled at what is going on.

Listen to The New York Times: Sweden has become the world’s cautionary tale. (This article came out today, after I had started writing this post about acflory’s post.):

Its decision to carry on in the face of the pandemic has yielded a surge of deaths without sparing its economy from damage — a red flag as the United States and Britain move to lift lockdowns.

This is why I won’t go out

I am in that cohort (which has been moved down to the age of 60). When US hospitals are full of patients who need support, they have plans – to deny coverage to people based on age, on perceived value, on assumed quality of life.

I resent the thought that they think some young person who went out partying and voluntarily exposed himself to the virus and caught it is somehow more important than me, who am being very careful (yes, I know – because I can). Those who put themselves into groups of unmasked other people and drink to oblivion.

Our local hospital’s covid beds are full now.

Enjoy your beer.


Thanks to acflory for permission to copy her summary, which is concise and coherent, and terrifying.

Dr. Tollinger has asked people to boost his message; I’m assuming the links to his video are okay with him. He also has a Facebook page.


PLEASE BE CAREFUL: THE LIFE YOU SAVE MAY BE YOUR OWN OR THAT OF SOMEONE VERY DEAR TO YOU.


 

Lockdown is increased following covid-19 spikes

Part of Alicia's face with pool in background

THE FIRST WAVE ISN’T OVER

The requirement for reopening our facility in any small sense was that our state, California, needed to meet the parameters for reopening.

Our Yolo County authorities issue rules which must be followed by businesses, depending on the state guidelines.

A few weeks ago, on June 9th, a gradual, cautious reopening of our dining facilities was initiated, allowing those who chose to participate the ability to go to the dining room for dinner. Many changes were instituted to get people in and out of the dining room safely (most of which would have been too hard for me), but not allowing the kind of socialization we used to have of dining with others not of our ‘household.’

The reopening has been rescinded due to spiking coronavirus cases

I can’t blame this facility for taking every possible precaution – after all, one of the things that happens is that our total survival as a community depends on getting new people in to what is a ‘forever home’ as our older or frailer members leave us.

And reputation is everything in the business world – we can’t afford to have too many empty apartments or the price for the residents will have to go up.

And it is obvious that people will think long and hard before moving INTO a facility that has already had covid-19 cases.

The restrictions are necessary

because the outside world refuses to take the pandemic seriously – but we know how high our death rates would be if it got into our community and spread.

That’s not even a hypothetical: a third of covid-19 deaths, or more, have occurred in people in nursing homes.

And a CCRC (Continuing Care Retirement Community) by definition has a nursing home component (as well as an Assisted Living one) to go along with the Independent Living apartments (where most of the residents live, and where everyone who is part of the community must come into originally).

Lowest common denominator for the community is that EVERYONE is in lockdown.

Because we live in the same building. And are served by the same staff for many things.

I live in fear that our staff OR our residents may bring the virus in

Residents here often (>60%) come from Davis. They have local family and friends.

We can leave the community at any time – at our own discretion. We can see anyone we want – outside.

There is a requirement (probably from the county) that those who sleep one night or more away from URC then self-quarantine for two weeks when they come back.

But it doesn’t cover those who go out for the day for whatever reason, and come back the same day.

We depend on each other being sensible – including our staff, ALL of whom live elsewhere.

So I practice ALL the precautions

So that even if other people don’t do what they’re supposed to do all the time, every time, I have done everything I can NOT to pick up the virus from them if they have it.

The biggest one is that people don’t cover their NOSE with their mask.

They might as well not bother wearing the mask!

It slips down. It’s uncomfortable. They ‘forget’ – and it horrifies me.

I remind them.

They put it back on, and I see it slip off again a moment later!

Staff, Residents, Contractors here installing carpeting – they still don’t get it!

A facemask worn with the nose hanging out is NOT a facemask! Basically, it’s NOTHING – because someone having trouble breathing through the mouth behind the mask will automatically breathe through the NOSE – expelling ALL the air from their lungs through their NOSE out into the community.

Sigh.

I blame education which doesn’t teach every child that their NOSE and MOUTH are connected inside their HEAD.

Among other things I blame.

So I’m horrified, I tell them (they sometimes pull the mask up over their nose and I often SEE it fall down immediately), and I wear mine, stay away, wash my hands…

And try very hard not to leave the apartment.

A small positive note

The county has allowed limited pool access, and limited aqua therapy with a ‘medical’ person present.

So I got into the therapy pool twice for half and hour this week – and am still in a lot of pain from things I stretched, very gently, but which had had no warm water for over three months.

I may not be able to go twice a week (Tuesday and Thursday are too close together).

They may close it back down for whatever reason.

I got no writing done on those days, nor the days after (another reason I may have to do just one).

But the good feeling was amazing: in the water I am not disabled.

In the water I can move, stretch, even go up to tiptoe (in the deepest part of the pool) – things I cannot do very well or at all on land.

I am grateful.


So what has gone well in spite of the virus in your life?


 

Nobody does anything about the weather

A red adult tricycle on the Davis, CA, greenway, with the wildlife refuge behind her.

Trixie, my trike

YOU CAN’T SEE THE WIND, BUT IT’S THERE

It is curious to me that it can get so very hot for a week or so – and then go back to reasonable, at least in the mornings, when the world is still heading into summer.

As the world goes around the sun, it gets hotter in the summer and then colder in the winter, but the small variations from day to day often seem to come from nowhere.

The husband has a touching belief in weather predictions. He thinks that what they say will happen, will happen, and seems disturbed when it isn’t dry on a day he intended to put down fertilizer that required dry grass.

Me, I believe, maybe, what’s happening in front of my nose.

Today’s trike ride temperature was supposed to be a balmy 72°F – but it was very windy, and the shorts and short-sleeved shirt I wore could have been replaced by something heavier, especially since I tend to slow or stop a lot because I’m trying not to exhaust all my energy – and lose another writing day, an all-too-frequent occurrence.

I had a bad night Sunday night – so I didn’t get out for my ride yesterday, because by the time I got up (9:30), it was already way too hot for me.

So I was extra careful this morning, and managed to go for a ride while the housekeeping ladies were here, and got blown around more than I had expected.

I had to change my route

Davis landscaping crews have altered my last two rides. I don’t know why they have to block the entire greenway path for longer than two vehicles. Most times you really can’t change the route you’ve chosen, because you can only get on and off the path at given intersections.

However, walkers and runners, even with dogs, can just slip around the trucks and trailers. The trike and I are much wider, and not really suited to going on grass or slopes – which also take more energy to navigate.

So, as I came upon another blockage this morning, I had to figure out how to get home on city streets I don’t usually use.

And it was somewhat longer. And I am more wiped out than I planned.

But getting out is necessary.

I just hope I can recover enough to finish 28.5 – I finally figured out how to handle what could have turned into a plot hole, and then one more (28.6), and Chapter 28 can go to the beta reader, the lovely Rachel.

It is frustrating to need exercise to stay even remotely well, but to find that every single trike ride can cost me a whole writing day. There’s got to be a happy medium in there somewhere.


How has the weather altered your current planning?

Are you going to watch the livestreaming of the Summer Solstice at Stonehenge on June 20 and 21? The kids and I intend to.


 

Creating a new normal from debris

This morning, while the husband had gone to the grocery store on the URC bike to get the few things we need to supplement the dinners here, I spent a half hour singing.

With Kate Wolf, on Green Eyes.

And with Gordon Lightfoot, Sundown.

The first I had never sung; the second, I remember singing so many times back when it was new, I was in college and grad school, and had joined the Columbia Record Club, and had several of his records.

It is easy to let things slip when under a pandemic

I didn’t realize how long it had been since I sang.

Apparently, going to church on Sundays, plus starting an hour-long, twice a month folk-singing group here at URC had been enough to keep my vocal chords in working order, even tired. Each time, after an hour, I had used my voice, and it seemed okay and I was happy with the quality of the sound, happy enough not to give it another thought.

Well, it has been months since I did that kind of regular singing (forgive me, Carol, singing teacher, for not singing every day).

And when I tried to sing about a week ago, it was as if someone had stolen my vocal chords and left someone else’s unused ones in their place.

It was scary. The singing voice was almost paralyzed, and nowhere near what I had come to depend on whenever I wanted it.

So there’s one more thing I have to maintain consciously

The list is getting very long.

Every day, before I can get to sleep, I have to put all my joints through my little stretching and range of motion exercises – or I twitch so badly sleep is impossible. Literally. For hours. Lying there in bed, twitching as if hit by a cattle prod every 5-10 seconds. And now I also have to get up and eat something so my stomach will let me go to sleep.

None of this body stuff used to be my responsibility (except weight: as I’ve said many times before, I do not understand why I should have anything conscious to do with maintaining the right body weight – I don’t have to remember to breathe or make my heart beat!).

I’ve given up complaining – it doesn’t help. When I realize I’m twitching because I didn’t do my exercises, I force myself to lie there – and do them.

When I realize what has woken me up at 3am is that my blood sugar is crashing, I get up, eat a half cup of cottage cheese, and then, while my brain’s blood is diverted to digestion, quickly lie down and get back to sleep.

The demands of the body are nonnegotiable

Insistent.

Immediate.

And a pain in the neck.

But I develop another heuristic, another shortcut for dealing with the new problem, pay attention for a few days or weeks, and put it on the list of ‘things that must be done.’

And I fear when someone else must take care of me, because they’re not going to have the ability to do the necessary actions the instant I need them, and I’m going to spend a lot of my time uncomfortable and not able to do a thing about it.

What a life!

One more consequence of the lovely gift we’ve all been given is to watch it go away.

How to deal?

ME/CFS? Aging? Luck of the Irish? Who knows.

I try to let it take as little of my time and life as possible.

Not complainin’, just sayin’.

And I do whatever I need to keep writing.

While watching the appalling stuff burbling out in our society that has long been suppressed. And trying not to cry.


What is on your list? What are you in charge of that you never had to worry about before?


Thanks to Stencil for the ability to create graphics that are more interesting than the words I throw into them.


 

Testing the new block editor tentatively

Water drops. Text: How to survive Boredom. Not very well. Alicia Butcher Ehrhardt

THEY TELL ME JUNE WILL FORCE USE OF THE NEW EDITOR

So I’ve decided to test it out while I still have room to run and scream if I don’t like it.

So far it seems very much like the old editor, except with new controls – which I don’t know yet.

I don’t even remember creating the graphic above, but it’s in my media file from my days in New Jersey, so I probably did.

I’m getting a bit more energy from my low-dose naltrexone.

ldn works differently from medicines.

It blocks opioid receptors in your brain for a couple of hours, during which your brain decides something’s wrong – and creates more of them.

This leads to more endorphins, and other things happen, so you find yourself dealing with generalized inflammation as well.

Some people even think it will help deal with the coronavirus; I’m not going to test that deliberately, and don’t know how I will tell that I have or haven’t, but it’s a good thought. Anything that helps.

I’m also getting, a lot of the time, less brain fog

This is the main reason I’m interested in it: in these thirty years I’ve had ME/CFS, I haven’t found anything I can DO to reduce brain fog, and have had to wait every day to see if my brain would kick on and be usable.

Then I’d have to make sure whatever functionality showed up that day wasn’t needed for something critical in life, which is why I did very little writing when we were moving and packing and sorting and dejunking and dealing with real estate agents (theirs) and lawyers (theirs) who didn’t do what they said they’d do or when they said they’d do it, even though the contract clearly said we could dump the whole idea if they didn’t.

My top level functionality hasn’t improved

but I think the bottom level may have come up a bit.

The most notable effect, after taking a year to slowly titrate the ldn up to the therapeutic dose, is that I seem to spend more time every day toward the higher end of the functionality my brain is capable of, and get more done in that time.

And it seems to come every day, which was something I couldn’t count on before.

In fact, I was doing prep work for today’s writing around midnight last night – something that, trust me, never happens. I’m usually dead by 8 or 9 pm, even though my brain refuses to admit it and allow sleep.

Objective measurements?

Four finished scenes in the last two weeks – absolutely unheard of.

It still takes a lot of time to do what I do, but I’m spending more time per day doing it, so it is taking fewer days to get in the necessary time.

As my friend MT would say, Woo hoo!

And other than finding it slightly annoying, I’m not having any trouble making the new block editor do exactly what the old editor did, which is a few headings, some paragraphs of text, and image or two, and

Wait a minute. Where did the categories and tags go?

There they are, under a tag ‘Document’ up at the top of the page.

So far it is twice as many steps to select a heading style for a block of text. Annoying.

There is still a link ‘Switch to Classic Editor,’ which I will use until it disappears, but this was not that hard to figure out – for my simple blogging needs.

Which I’m pretty sure won’t change until five years or so from now when they decide to edit the editor again.

Oops. WAIT. Where’s my horizontal separator line?


This exercise has taken me to the ONE UNFORGIVABLE SIN of an editor, eating my text.

The previous one SAVED everything as I wrote.

Now I have to do it manually.

VERY BAD EDITOR.


Staying comfortable in the saddle again

Section of a side view of the Rose Garden at URC showing the side exit door and some of the path

Out door – but not in right now

UNEVEN SIDEWALKS AS A CHALLENGE TO CONFIDENCE

We are on lockdown, which currently means you can go out, but not in, through all the usual exit doors in our building.

Why? So they can control who comes into our facility, and make sure they’re wearing a mask, and pass a quick health check, and I think take their temperature. Good precautions, and control of entrances is a part of that.

They’ve added a check station by the campus’ front entrance from the street, so cars and people coming in can be queried as to whether they are essential personnel, essential visitors, or not. A patrol car with a private security guy sits there, and some of our staff are in the little covered space to deal with contractors, delivery people, etc.

No enforcement possibility is necessary – it’s all voluntary, but family members are being turned away, even if they’re bringing something, most of the time.s-l500

Maggie2 is identical to Maggie

Both are black. Unobtrusive.

Maggie waits for me to find a part and a repair person.

But I found that after two months of not riding, I’ve lost confidence in my riding ability and Maggie2’s balancing ability, so I need to go out with some excuse to ride around a bit every couple of days.

Part of it is sidewalks and paths and curb cuts and cutouts: they make look smooth to an able-bodied walker with no balance problems, but they are neither truly flat nor even remotely smooth.

Sidewalks and paths are made a square or rectangle at a time, with gaps between them. When a repair is done, or a utility opening is created, the finished product is roughly smooth (an oxymoron).

I’m not a light-weight kid with the great balance of youth

There is a lot of me, and the Maggies cope, but I sometimes wonder how much of a strain it is, and how near the actual limits I might be, especially when riding outside, with up and down slopes. I don’t go near steep gradients any more, and plan my travels with slopes in mind.

But if I haven’t been in the saddle for even a couple of days, I’m ever so slightly nervous when I hop on board, such as to go down to get the mail. When trundling down the corridors, I’m conscious when I start that I’m a little unstable.

It’s like when I haven’t spoken Spanish for a while, and my sisters rattle off on the phone, and I’m expected to just jump in and participate – and I feel so awkward reaching for a noun or wondering if they still say things in a particular way.

So tonight I went for a little planned ride

Checked the battery – 3 out of 4 dots. Good.

Took the elevator down to the first floor (elevators are wobbly because they’re on cables), and headed toward the side door (in picture). Right now the entire first floor is being painted, the furniture changed, and the carpet replaced – and is covered with a layer of plastic that crinkles as we ride along.

Use the paper towel so I don’t touch any surfaces directly, from the elevator buttons to the door opening buttons first into the stairwell, and then out into the side Rose Garden.

Grit teeth – tell myself it isn’t that big of a slope out. It isn’t.

Say hello to other Resident who chooses this moment to come out with a large dog and a frisbee – and ask that they both be mindful of where I am, as I don’t want to be knocked down or startled off my perch by a vigorous dog which is aching to get some running and jumping and catching in.

Go down the path – and run into a moving van which has barely left enough room for Maggie and me to go down the sidewalk.

In through the front lobby – and check that I can get out of the building near the Skilled Nursing section. They say yes. But when I get down there, I find that the door opener doesn’t work after 5pm, but I can get out if I push the door. Push, hoping no alarms will go off.

Then around the north end of the building, in and out of the patio area, and back to the front entrance – all the while up and down slopes, on and off of sidewalks, around sharp corners (keeping the two of us in the center of the walk), around patio furniture piled willy-nilly, smelling some lovely roses, and up and down several curb cuts.

On our way back now

Check in, chat a moment, tell them the door doesn’t open automatically after 5pm., but you can still get out (front desk seems knowledgeable all the time, but the details sometimes escape them).

Chat with a few of the servers, both of us masked – we miss our dining room staff like crazy. One is excited they are moving toward reopening some of the dining venues. I tell him we are not: no cure, no treatment, no increased hospital capacity, no vaccine – and exhausted medical personnel. We’ll probably stay in much longer than strictly necessary.

Pick up the mail. Chat with another Resident (I have to keep backing up). She’s hoping the path from hospital (starting in December, not covid-19 related) to Skilled Nursing and now to Assisted Living is only temporary, and that she’ll be able to go back to her Independent Living unit. I tell her I hope so, and want to know – I will be resisting the Assisted Living part in a similar situation unless I’m sure it’s reversible if I can handle it.

Zoom up the corridors, reverse the elevator ride – and husband say: “That was a short ride!”

Decontaminate

Put mail away, put everything back in its place, being very conscious of what might have touched a surface outside the apartment, stabling Maggie2, and washing hands twice, thoroughly, during the process.

And we’re home!

I regained my comfort, mostly, with riding. I’m glad I included time outside and with challenges – they were a bit scary and got better on the circuit. Other people commented on how smoothly we move – and I didn’t disavow the prowess.

But I know.

And that’s all the excitement of the quarantine/isolation at the CCRC today. Absorbing, eh? And reset the brain by seeing other humans (I haven’t been out much otherwise), and talking to them.

Until next time.

Tomorrow is trike ride day.

These things seem and are trivial, but they’re also important to do for psychological welfare, especially since we’re going to be at this a long time.


Stay well.

Writing persists, though right now it seems to be taking me 5-6 hours to get that brain to come on every day. I am well into becoming Andrew to write the next scene, after days of gathering.

That’s all I ask for.

Hope everyone out there is staying safe. Or recovering. I know some are not, and still have trouble some days believing the whole disaster.

“Another nice mess you’ve gotten me into.” Yup. Part of the week’s research included watching that used in a whole bunch of their movies. And yes, that quote is accurate. Memory is funny.