Category Archives: disability

Absolute right to tell doctor NO

DOES NOT APPLY TO PUBLIC HEALTH EMERGENCIES

YOUR BODY, YOUR LIFE

Even if you’re wrong.

I had a surgeon, the other day, refuse to do a minor procedure – WITHOUT EVEN MEETING ME – after talking to the nurse practitioner who examined me, because their ‘guidelines’ stated another procedure HAD TO BE DONE FIRST to rule something out.

Now before anyone gets all worried, it is a minor procedure which would improve my life significantly.

I didn’t say no – I asked for statistics.

Was told they had guidelines.

It is my very real experience in previous cases that ‘guidelines’ are often years out of date, because, as one doctor told me, “It takes time for the research to be incorporated into the guidelines.” Lots of time. A decade and a half in the previous case.

But even that is a red herring

I don’t know what the statistics are in this case, but I’m guessing MOST of the ruling-out procedures are unnecessary. As in, don’t discover anything that needs being attended to in the majority of cases.

In the case of normal reasonably-healthy people, going through a ruling-out procedure is a minor inconvenience, the loss of a day or two of their time, and an allowable use of their medical leave (if they’re working).

FOR DISABLED PEOPLE WITH NO ENERGY, EVERY procedure

carries risks and an amazingly high load of days lost and physical inconvenience, minor and major misery, time, calling in of favors, arranging…

You name it.

And it is very reasonable to 1) ask if something is STRICTLY necessary, and 2) supported by research and statistics which show the procedure is worth the enormous effort it costs that disabled person.

If a restaurant meal is $50 for one person, and $50,000 for another, it is reasonable to ask first whether the second person wishes to pay that much (this is what prices on menus are for, among other things).

Not taking that into account in medical procedures is the equivalent of saying, “If you have to ask, you can’t afford it.”

So you can’t eat it, even if you’re hungry.

The ADA Factsheet states:

The ADA requires that health care entities provide full and equal access for people with disabilities.


This can be done through:

  • Reasonable Modifications of Policies, Practices, and Procedures. Adjusting policies, practices, and procedures, if needed, to provide goods, services, facilities, privileges, advantages, or accommodations.

At the end of the fact sheet there is a feedback form. Where it asks Is the information useful to you? I checked NO.

Where asked How could the usefulness be improved? I answered:

“Reasonable modifications (or changes) to policies, practices, and procedures” does not address RECOMMENDED procedures used to RULE OUT a possibility, when it isn’t a strict requirement, would be much more difficult for the disabled person to satisfy than for a normal healthy person, and is not wanted by the disabled patient – who understands but does not consent to the recommended procedure, and is thus prevented from having a service they DO need and want.

Where asked What are the most important changes we could make? I answered:

Directly address the fact that, for disabled people, things can be MUCH more difficult to do because of the disability itself (which in my case includes very little energy in a day), and it is not fair to insist they meet the same RECOMMENDED but not STRICTLY NECESSARY requirements an able person is presented with.

And where asked What other factsheets do you think we should write? I answered:

How to lower the barriers which prevent a disabled person from getting a necessary service/procedure when these barriers are ONEROUS to a disabled person compared with an able person.

Do I expect any help from the ADA people?

Not really.

The wheels of government move slowly in the best of cases, and there will be pushback and talk about ‘lowering standards’ and interfering with ‘recommendations by doctors and medical societies.’

And, more ominously, ‘disabled people not knowing what is good for them.’

Change would likely take longer than it does to update those guidelines they are so fond of, produced by a medical society, 15 years after the research changes, to CYA those who might be sued if they don’t follow ‘standard procedures.’

I’m pretty sure they were not thinking about the EFFECT of the above on a disabled person with limited capacity – just imagining what it would be like for a person like themselves (rarely disabled) to go through the procedure, say, with an emotional support miniature horse (yes, they are specifically included, but might be excluded if not housebroken).

I’m furious because there is no recourse

This is the only version of the medical procedure I need within my medical services system.

It takes me a lot of energy to even write about it here; the actual recommended but not in my estimation strictly necessary pre-requisite to the procedure I need is one that would take over a week of ALL my time and energy to do – and I’m not sure I could manage its requirements anyway.

Finding an alternate to their clinic is beyond my capabilities.

The minor procedure would improve my life immediately but isn’t going to happen.

And I don’t think I’m going to get anywhere with the ‘feedback request’ from my medical providers – thought I may just send them this post.

As the disabled person

I should not have to fight over things like this, but should be asked my preference without having to go through the stress of fighting the surgeon who hasn’t even met me.

I have wasted enough time and energy on this already.

I hope I can continue to manage the problem.

And I wonder exactly what they think ‘informed consent‘ means when I do NOT consent.

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And, if you’re worried, I’m not taking stupid chances – I’m not planning on dying of something preventable.

Why do disabled people have to fight so hard for stupidities like this?

Why isn’t the able world asking how to help?

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Being present in the writing moment

Imaginary Circumstances

WHAT ARE YOU GOING TO DO ABOUT IT?

I need a win.

After much reflection, some of it in writing, other of it in the middle of the night, I have realized that the win, to be mine, has to come from me.

A real win is one you create yourself, the hard way, with blood, sweat, and tears. Since you EARNED it, you OWN it.

Since you created it, it can’t be taken from you (do remember your backups off site, though!).

Someone buying Pride’s Children PURGATORY – in paperback! – is a win, as is someone purchasing the ebook, or taking it out at Kindle Unlimited, especially when I haven’t done any marketing in ages. But it’s not something I have control over.

I had a recent win against Covid

As soon as the CDC said immunocompromised people would be on the short list for the early boosters, I asked my doctor AND my facility about it – to no avail. They said, “When we get it, we’ll let you know.”

But I started seeing other people with my same illnesses posting on FB about having already received the booster shot.

Regardless of how (I wouldn’t lie to get one, but don’t even know if others did, though there have been newspaper reports of lying), the key fact was availability.

So I nagged the doctor’s office, reminded them of my immune status, and they made it available. Then I arranged Medvan transportation, went and got the thing, suffered through the side effects (second day was quite flu-like, and I had more brain fog than I anticipated for the days after that), and, in another week or so, will feel I have done as much as possible to protect myself. And did NOT take that dose from someone getting their first vaccine.

So, win.

I finished a tricky chapter in Pride’s Children NETHERWORLD.

As I get toward the explosive end of NETHERWORLD, it is getting even more important to get it exactly right, because even less time separates the end of 2 from the beginning of 3 than separated the end of 1 from the beginning of 2, and every story-second counts.

Sending Chapter 35 off to my beta reader was a key step: it is the 3/4 mark in several ways, and I have been forced to make the tiny detailed decisions that make the difference NOW, and not in some writing future – ‘when I get to it.’

It’s getting harder and harder physically and mentally

I acknowledge that, and move on.

Restarting after the brain fog is always tricky, because I have to assume I’m past it before I’m sure I’m past it, and restarting is part of the process of getting past it. What I mean is that it takes a huge amount of psychic energy to restart, sort of like the difference between static and dynamic friction (starting to move a piece of furniture across carpeting is much harder than keeping it going once you start (so don’t stop!)).

Apply that pressure too early, and all it does is extend the downtime.

Wait too long, and situational depression sets in.

And there is always something else that need my limited attention ability – and seems more important just this minute.

So what?

I live with this, write with this, and have been at it for a very long time.

There are rumors on the horizon of research for long-covid that might explain another post-viral syndrome, ME/CFS’s problems, and it is possible that even after 31 years it might be helpful. Rumors – but this one has some interesting science behind it. We’ll see.

But, as the husband reminds me, even if it works it will be years before it is available, and I can’t let any of that time go to waste.

So I face the fact that there’s been a break, and get back to work.

Yesterday I took the first step:

I re-read what I have put together, in these brain-fogged days, by following process and trusting it will work as it has every time before – eventually.

And even though there’s one tiny part in the middle of the scene where a decision has to be made about an order of events, the rest is written.

And the end made me cry (actual written steps in said process: “DIG DEEPER – CRY” and “BECOME THE CHARACTER – WRITE WITH THE EMOTIONS RAW.”)

The character needs it, but I am the one with the whip, forcing change. It hurts.

Extra insight

Being present in the writing – mining my own experience: “HERE AND NOW; BEING PRESENT!”

I may work in imaginary situations, but if they don’t get treated as real, with me there, documenting as it happens, it never converts into something good.

From my Journal: “… is nice – but she needs extraordinary, and open to a degree she won’t be able to demand from him.” It is either there in someone, or it isn’t.

Voltaire said ‘the best is the enemy of the great.’

Many people think perfectionism keeps you from getting something finished and out the door and good enough.

But in writing something unique, it matters. Not that you become a perfectionist, and never get anything done, but that you not let ‘good’ or ‘good enough’ or even ‘good enough for government work’ keep you from achieving your own standards.

Because I hope my readers are the people who have those same standards.

If you are, you will know that about yourself.

THAT’s where the wins come from.

So back to the drawing board, salt mines, design board

While I still can.

Because if it’s meh, it costs me way too much to be worth it.

Chapter 36 is well started, and I am imbuing it with the frustration of writing in the middle of the challenging circumstances that are a pandemic which no one expected would last this long.

And a lot of the pain.

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If you look for it, something will pull you back to the task.

Can you relate?

What do you expect from your writers?

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How NOT to treat disabled patients

Medical personnel providing a service.

JUST BECAUSE THEY ARE HEALTHY AND WE ARE NOT

When did things become BACKWARD???

When did THEIR time become more important than ours?

When did CLIENTS become patients?

When did their needs to be in control become more important than the clients’ rights to timely and adequate and compassionate service?

When did their convenience supersede ours?

When did taking care of disabled clients become a burden to them, an inconvenience to their mission?

When did their control become more important that our PAIN?

When did it become acceptable for them to frighten patients, to threaten them with dire consequences for not obeying instructions to the letter, to TELL them they will end up in the ER with a massive attack of something? (This has now happened twice.)

When did THEY end up with all the cards – and the self-righteous belief that they know best for OTHER people with REAL LIVES?

This is the letter I would LIKE to send to my medical services group – if I dare, once I have carefully weighed the consequences to my future treatment.

Think about that: I have to worry that they might be bothered by something I, the person responsible for paying them, might say. As nicely as I can.

First, though, I would like to say: don’t mess with a writer – they are good at nuance, both reading it and writing it. Not on the spot, of course – that’s for narcissists and sociopaths and politicians and comedians – but afterward, when they’ve had a chance to think.

And to realize what just happened.

And rewrite what you think just happened into the correct narrative that takes the CLIENT into account.

Except rewriting the narrative created by the thoughtless ‘professional’ requires 1) rereading it (I won’t – too negative), and 2) putting in an enormous amount of my own time – knowing it probably won’t work. Or change anything.

THE LETTER TO MEDICAL PERSONNEL AT XXXXX which I may never send.

Because I need some kind of medical care, and all of these are similar in that they think they know it all, and they OVERWHELM you.

My mind keeps nagging about the letter I should write to my medical providers about energy, visits to specialists, and fear-mongering. Which was applied to me, a disabled person, at the end of a too-long-for-a-disabled-person day.


And the tone of the after-visit summary took my breath away – and made no mention of or accommodation for that disability which caused so many of the problems.
Bullying a disabled person is NOT nice.

I will NOT have the procedure unless I decide it is necessary, there are several more worrying symptoms, and they don’t respond immediately to medication.
And do NOT appreciate how I was treated so cavalierly.

I need to write the letter so it appears in my medical record, and I can point to it, but I don’t expect it to have any effect on anyone there.

Do NOT treat disabled people the way you treat normal people – we can’t take it.

And no, it doesn’t NECESSARILY help to bring someone else along. Then I have to deal with THEM, too.

The calculus of what I can take vs. what I need is ongoing: don’t assume, ASK.

And more than asking, could you make a climate where I will think of asking myself, EVEN when exhausted?

Thank you.

CLIENT (person who pays the bills)

The above is not coherent – I’m still going to let it stand, because the incoherence is generated by the system.

I’ve let this one stew for almost a month, and I’m still angry. I was going to just let it drop, leave the unfinished post among the almost 100 draft posts I never finished.

Not naming names – and I’ve decided it isn’t SAFE for me to let them know what I really think, so I’ll keep tweaking the interactions (as in my previous state – which was as bad or worse) instead of taking them head on.

Other options to minimize the problems

One is to do as much as possible via video visits; those are usually on time, one-on-one because the provider isn’t popping in and out or pawning you off on a nurse.

Another – based on my last visit to another city for treatment – is to make sure you have done the paperwork part of a visit SEPARATELY via video BEFORE the in-person appointment. I find it a major problem to have filled all the paperwork before the visit, and to be grilled over every single thing in my medical history again anyway.

I will explain that it is very difficult for me to do BOTH in a single visit – and, by the time I get the service, I am exhausted and frazzled and not being as coherent as I tried to prepare to be.

LEAVE the minute it gets to where I can’t keep going. I keep trying to respect THEIR time, at the cost of trying to continue to talk and even be awake and coherent when things go on too long. Going back is not a great option, but maybe I can finish by video.

Stand up for myself in some small way each time.

Say, “This is not helpful.”

Risk being labeled difficult.

Complain to higher management – with specifics (respectfully – that writer nuance).

Suggestions?

Because the stress of doctor visits has gotten to the point that all I want to do is avoid them.

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Stubborn opinionated determined author at work

You can’t guarantee the results

Isn’t ‘effort’ the same thing as ‘work?

After I wrote the above, I realized that I think of them separately (personal choice), with effort being the whole mental atmosphere surrounding what writers do – from paying attention to things other people never notice, including information on publicity, covers, and selling – and work being actually sitting down and turning that attitude into things such as a finished ad or a description that rocks or any number of other ‘deliverables.’

WORK‘, of course, includes the writing itself, the finished words on the page of a pdf you are about to upload to Amazon or others.

And know it’s the best version of the story you are able to provide that mysterious elusive creature, the Reader.

After that, Amazon takes over and supplies copies of the WORK to those who pay for it.

For many of us, Amazon is currently publisher and distributor, for a hefty portion of the rewards (30% for ebooks, more for print books). I am currently okay with that. Because that equation is far worse on the traditional publishing side, and many of the benefits to using them (editing, covers, advertising, promotion, reasonable advances, royalties) are on the path of the Dodo bird.

Writing successful fiction requires two additional things:

Finding your potential readers, and

Getting them to try your writing.

If you haven’t truly written a good book that readers would buy if they only knew about you, YOU’RE WASTING YOUR TIME when you promote and advertise and stand on your head to do PR. You may fool some of the people some of the time, but that is rarely a recipe for commercial success.

Indeed, after reading some authors’ latest ‘work’, I know I will never read another from them.

But the whole discoverability part of writing is hard, tricky, and requires the one thing I don’t have: energy and the capacity for endless self-promotion.

If you have written ‘a good book’ for a segment of the population

the satisfied readers should be clamoring for more.

If you have more (backlist), they have a lot to discover and enjoy.

If not, well, keep working. And some readers will never get that pleasure from you again, but it won’t be your fault, if you’ just keep truckin’.’

And hope for some luck, or ‘Here a miracle occurs,’ or going viral, or catching someone’s eye…

Some of us will simply have to hope for an afterlife, and wait to ask Margaret Mitchell what happened to Scarlett. Assuming she still cares – the afterlife runs on different rules, I believe.

And now I’m going off to nap, followed by keeping my nose to my particular grindstone.

I do so want to finish. It’s coming nicely. And every time the idea that life might be easier if I spent it entertaining myself instead of torturing myself with imaginary people, I have managed to fight that attitude off.

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What are the things in your life that you will never give up on?

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The value I’m offering MY Readers

You’ll never get it back

A blogger’s question made me think:

HOW MUCH TIME do my potential readers spend looking for SOMETHING, ANYTHING interesting to read before finding a few possibles,

and

HOW MUCH MORE TIME do they spend starting and then giving up on books that pass their initial selection process – BEFORE they find one they like and actually enjoy reading to the end?

Readers may have preferences, but the good ones, the educated literate WHALE readers – the ones who read a lot of books, hard books, complex books, and often buy them in hardcover (which I will produce when I have 1) a lot of time, or 2) Amazon lets me into their beta hardcover program), and then RECOMMEND them to their friends – are often happy to just read ‘a good book.’

Because their appetites are not satisfied – no matter how many books are on their To Be Read piles.

They are not looking for ‘more of the same vampire books.’ Or ‘the latest James Patterson book.’ Or another ‘clean Romance.’

They are let down by what they read (have you seen how many NEGATIVE reviews there are on books such as The Goldfinch? They won’t all be people who can’t handle the complexity and bought it primarily as a coffeetable book!).

They want what writers are counseled to produce: a good book

So it got me to thinking about my writing, and what I am trying to produce, a good story, a book that is worth the time invested in reading it, a book which will make the same Reader want the next in the trilogy.

It’s easier for me to vet my potential Readers than for me to try to please everyone (an impossibility).

So I’m going to try to QUANTIFY the ineffable

There’s an example: If you are potentially MY Reader, either you already know what ‘ineffable’ means, or you will figure it out from context and a dictionary – because you like words and enjoy pinning down ones you’ve seen before but don’t remember exactly what they mean. And either way, it will give you PLEASURE just sitting there on your page.

If ‘ineffable’ appearing in your reading material is annoying because you think the writer’s being elitist or you’re done with SAT words, your are NOT my potential Reader.

Because ineffable came to my mind as what I wanted to say (and I did a quick check to make sure I didn’t have it mixed up with something else – fatal to the point I’m trying to make). Something unquantifiable because it is big and complex: how to help Readers know the value of my work – to them, the only people they are really interested in satisfying.

Everything else is miscommunication.

And I’m going to quantify it in a very me way

I’m going to make a list of books which have influenced Pride’s Children by being favorites of mine still years after I’ve read most of them, and why.

I’ve done this on Goodreads when carefully looking for potential reviewers, using the Compare books feature, especially if they’ve reviewed and I can see if our reasons for loving a book are compatible.

All you have to do to find out if you are potentially a Reader of my fiction is to see if several of these hit you in similar ways.

For the actual writing part – because we can love the same books without me being able to produce a coherent sentence in a similar style – I will make my standard recommendation: go to Amazon, to the print version – because my formatting is part of how I want to write. The ebook is available and I love it, too, but ebooks have reflowable text on purpose so you can change fonts and sizes to suit you; great for reading, not so great for seeing if you like everything about the author.

  1. Read – but don’t get hung up on – the description; these are always being tweaked to occupy the very limited real estate on the book’s page. It is an indicator, not the definitive reason for choosing or not choosing a book.
  2. Read some of the reviews. I’d choose several of the top reviews (most of the longer 5* ones from older men) and maybe a couple of the few negative ones (you’ll know what I mean if my writing will appeal to you). Go for the long ones – but not the ones which summarize and ruin the plot: you’re looking for reviewers like you.
  3. Read a few pages of the Look Inside! – by the end of the third scene you will have met all the point of view characters, by the end of the first chapter or two you will have picked up the as-needed style of alternating them, and by the end of the sample, if not much sooner, you will know if – in your opinion – I can write.
  4. Ten or twenty minutes spent will tell you all you need to know. And you should spend that on a potential book; Pride’s Children PURGATORY will take you a good while to read.

That’s it: checkout my list of influencers and read a bit of the actual writing, and then, if you’re one of us, buy in your favorite format and get to reading.

I can guarantee it’s a good story; after all, it has occupied all my usable writing time for the past twenty-one years, I’m almost finished with volume 2 (which ends well but still leaves you wanting more), and volume 3 is completely plotted and exists in rough draft form (so you know I know exactly where we’re going).

What kind of a good story?

Well, here is a partial list of the themes woven in there somewhere:

  • Family matters
  • Love is based on trust
  • Children matter – and must be protected
  • Beliefs are important
  • Beliefs lead to action
  • Right beliefs lead to right action
  • Dignity matters
  • Good will prevail
  • Life throws stuff at you – how you handle it is who you are
  • You can’t stay married to someone who doesn’t want you
  • Some people are objectively better than others
  • Integrity matters
  • Evil exists – and can’t be excused
  • Love transcends age
  • We have a capacity for intense love: of a character. Of an actor. Of a story.
  • Disability themes: how common it is, the intrinsic value of the person who is disabled, and the empathy I want developed in readers and the world.

And the overall theme: How you live your life PROVES what you believe. And believe in.

Now for those influencer books:

(you will want to have read – and liked or have been affected by – at least several):

  • Dune (plus Dune Messiah and Children of Dune)
  • Jane Eyre
  • Wuthering Heights
  • On the Beach, Trustee from the Toolroom
  • The Thorn Birds
  • The Left Hand of Darkness, Roccannon’s World, Planet of Exile
  • Leviathan’s Deep
  • The Moon is a Harsh Mistress
  • Great Expectations
  • Frankenstein
  • Strong Poison, Have his Carcase, Gaudy Night, Busman’s Honeymoon, Talboys
  • Rebecca
  • Exodus
  • Lucifer’s Hammer
  • A Tale of Two Cities
  • Dr. Zhivago
  • The Exorcist
  • The Dying of the Light (also named After the Festival), A Song for Lya
  • Ender’s Game
  • Huckleberry Finn
  • The Foundation trilogy
  • The Crystal Cave, The Last Enchantment
  • The Complete Sherlock Holmes
  • Brave New World
  • The Hobbit, Lord of the Rings
  • The Spy Who Came in from the Cold, Tinker Tailor Soldier Spy
  • Black Beauty
  • Silas Marner
  • Snow Falling on Cedars, Our Lady of the Forest
  • Alice’s Adventures in Wonderland, Through the Looking Glass
  • The Handmaid’s Tale
  • The Three Musketeers
  • To Kill a Mockingbird
  • GWTW
  • Way Station
  • A Canticle for Leibowitz
  • The Name of the Rose

A good serving of these plus a familiarity with Shakespeare and the Bible.

That’s basically it

Spend a bit of time vetting your reading material – you will be spending hours of your life you will never get back – and then settle in to a nice long encounter.

You may also pray for good health for the writer; in this case, she needs to be semi-functional to be able to write at all.

IF you are persuaded, leave a comment saying why – feedback is crucial to writers, especially if you want more work from them.

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Won’t read your self-published book because

[WARNING: IF YOU ARE ALREADY PERFECTLY HAPPY WITH YOUR READING MATTER (or have already read PURGATORY and are waiting for the next volume in the trilogy), you may skip what follows with a clear conscience.]

I might find something I liked – and have to change my attitude about SPAs (self-published authors).

I prefer to wait until others decide what I should read.

I like classics – and classics were never produced by SPAs. Oh, wait. They used to be (long list of SPAs such as Benjamin Franklin and Samuel Clemens and…) but modern writers are not good unless they can submit and submit and maybe be granted an audience with an AGENT!

There is so much out there I could never figure out what to try.

I want the opinions of established critics, not my fellow readers. The critics have to know what they’re talking about, right? Because their descriptions and reviews are always exactly what I need to know, right?

I actually don’t want you to read my self-published novel(s)

Because I have some requirements of my READERS:

They have to love to read, even when it is difficult and they have to read in small pieces.

They have to love a lot of classics – because that what I educated myself by reading, and it has a habit of showing in my writing.

They have to love at least something out of the mainstream category

It shows openness of mind. Here’s a partial list of my favorites – and all of them influenced me and my writing in good ways:

Dune

The Moon is a Harsh Mistress

The Thorn Birds

Great Expectations

A Tale of Two Cities

Lucifer’s Hammer

Jane Eyre

Pride and Prejudice

Huckleberry Finn

Silas Marner

Dorothy Sayers’ Lord Peter Wimsey novels, especially Strong Poison, Gaudy Night, and Busman’s Honeymoon

Don Quixote and some of the Mexican picaresque novels (for Spanish speakers)

It helps if they loathe

Some of the books I found unsatisfactory because [reason in brackets]:

The Lovely Bones [that ending]

Lolita [subject matter]

The Great Gatsby [cannot get into it – don’t care about any of the characters]

A Confederacy of Dunces [after the first chapter I wanted to wash my brain out with soap – good writing in the service of that?]

Tess of the D’Urbervilles [they couldn’t find some excuse not to hang poor Tess? And yes, I know things were very different back then]

Anything by Dan Brown

Any number of shades of gray

And it really helps if you share some of my blind spots and prejudices

You don’t care for anything supernatural in your novels.

You prefer novels with characters you can identify with. And they can’t be improbably young, sexy, healthy as the only requirement. They should also have a job. And a life.

You don’t want anyone swooping down and saving anyone – salvation must be earned and isn’t assured.

You prefer not to have to ignore a lot of unbelievable plot points (really letting myself in for open season here).

Just because the author writes it isn’t enough justification.

Typos are not good.

Spelling is actually important.

You don’t read modern Romance novels.

You don’t like cozies, except if you categorize Agatha Christie as one.

Chick lit is too perky for you, except in small quantities.

When original authors died, their franchises went with them, and there are NO exceptions to this rule no matter how attractive you find Benedict Cumberbatch. Or Sandra Oh.

Why am I being this picky?

Because I’m looking for people who will actually LOVE the Pride’s Children trilogy, not just sort of like it.

Because I do not write for people who read outside my preferences – they are hard to persuade to try PC, and when they do, if they write a review at all, it is obvious they shouldn’t have tried it in the first place. I’m trying to save them some time. And annoyance (which explains their reaction).

Because people who love may recommend you to their friends, but people who don’t won’t – and book recommendations are the biggest way of finding your ideal readers.

Experience.

BTW, you can be a millenial or younger. That is not an impediment. Your taste palate for novels is the key, not the specifics.

I ALSO love the readers who are not my ‘Ideal Readers’ and love PC anyway. They are my heroes.

What about converts?

I admit to loving those. I have a number of reviews from older men who say, “I don’t normally read this kind of book, but I loved it,” and I treasure those above all others.

But they are very hard to find, it takes me a lot of careful and deliberate effort to get them to try PC, and it is time I should spend finishing the trilogy.

Surely in a world of SEVEN BILLION PEOPLE there are Readers already out there who are looking for specific things, already know what that is, and WILL RECOGNIZE IT WHEN THEY SEE IT.

Oxford commas and all.

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Please excuse my general grumpiness

The writing is going extremely well lately, and I may even finish NETHERWORLD this year, but my physical body is giving me a lot of… shall we say, distraction? And marketing can be a bitch.

Also, feel free to add to my canon in the comments. I will poach any I like and add them to the post, with credit to you.

If you’ve gotten this far without damage to your psyche, click on the book image (top right), read the descriptions and a couple of the reviews for yourself, click on the Look Inside! feature and read the first three scenes or so (you will have had enough to make your own decision by that point, and will have met the main characters for the trilogy). Make up your own mind. Go ahead, I’ll wait. I hope you’re one of us.

**********

Writing a silk purse from a sow’s ear

I DON’T WRITE CLEAN COPY

For my kind of extreme plotter, you might think everything would be planned down to the last jot and tittle – before writing.

It seems that way for some scenes I’ve written – I know exactly what I’m doing when I go in, and then I do it, polish a bit, and get out – and we’re done.

Because having the content and the outline and the knowledge of where a scene will go can make it easier to see what fits and what doesn’t, as I go.

Unfortunately, they’re the minority of my scenes.

Another set of scenes takes more work because there is a lot to include, and the correct path through all the necessary points can take me a while to organize.

And then there’s 32.2.

The sow’s ear of the title.

Oddly enough, a scene for which I had plenty of content.

But it came out of my head very oddly, as almost a single long piece of dialogue, a phone call no less, with the banter between Kary and her best friend writing itself as I eavesdropped.

Very realistic – I could SEE them talking, SEE the little connections, the friendship, the gentle poking when one person thinks they know better what the other needs, a scene you might overhear at brunch, or in a park, or while watching the children on the swings at the playground…

And it was wrong

Very wrong.

Boring – to me!

And I could see a reader doing the thing writers dread: skimming. Skipping ahead to see where the meat starts again. Not seeing the content because it was in the form of a dialogue between two women.

Just getting to the realization of what was the problem took me days.

Because there was nothing obviously wrong, and I write dialogue all the time, and it wasn’t particularly bad.

Good dialogue doesn’t guarantee great scenes

Almost a thousand words of good, realistic but compressed dialog.

You hate to give that up – and it took quite a bit of practice to be able to do that in the first place, create dialogue that gives the reader necessary knowledge in the form of a story.

I almost did what I never do: let it stand, leave it to the beta reader, move on and come back to it later, live with what I knew was highly imperfect (in my standards) because I had no idea what was going on that produced it.

But I did know:

The brain fog was thick on the ground and I couldn’t see over, through, or around it.

And this is what I produce when I can’t think: ‘almost’ writing.

It depended too much on the reader’s previous knowledge.

There was not enough scene-setting.

And it repeated things the reader already knew – a capital sin if done in any quantity: do NOT give readers an excuse to start skipping!

I bit the bullet, lowered the dose of a medication I thought might be the culprit for the recent fog increase (it was), waited for a couple of days until, thankfully, the head cleared.

Then I took all of the scene except for the initial paragraph, and put it in another file in the Scrivener project, fully prepared to dump the whole thing if necessary.

And I was able to get back to work – because I was darned lucky.

My greatest fear in life is that I will reach one of these points, know something is wrong, and never more be able to do what I’ve been doing to analyze, understand, and, fingers-crossed, improve what I’ve written, from the first gasp to the final zinger.

I’ve had this happen before to a smaller extent – I had to learn to write every kind of scene (and there are more kinds, I’m sure) – and since I’m still writing, have emerged every time.

But brain fog is more insidious than exhaustion, and you can’t just rest it away.

Brain fog scares me

It alters my essential self.

This time I found the cause, and it was something I could change. There are consequences, of course – in this case more physical pain – but I have other alternatives for physical pain, even if I’m trying not to use them (to spare liver and kidneys from having to disassemble those molecules and get rid of them); in the worst case, I can just tough it out, do some of the physical things such as stretches or (in non-pandemic times) immerse myself in the therapy pool’s warm water, wait until it passes if it has a specific cause…

Do not recommend your favorite remedy for brain fog – thanks, but I’ve tried an awful lot of things over the years that didn’t work, and I don’t have the stomach to try more. Assuming you even have one – brain fog is a particularly difficult ‘symptom’ to treat because it is so vague and amorphous and non-specific.

It’s a Catch-22: you need to be able to think to work yourself out of brain fog, and you can’t think until you’ve worked yourself out of brain fog.

Sometimes the passage of time helps.

Sometimes the disappearance of a physical illness, or its successful treatment or management, helps.

Sometimes – the scary part – you’ve lost that part of yourself and it isn’t coming back.

And sometimes you figure it out.

Once that cleared

I took a hard look at what I had been ‘creating,’ that conversation that repeated things unnecessarily.

And I got to work.

I went back to process: I’ve detailed my Left Brain righT method before; I still use it, tweaked a bit but usually to add a detail, not change something already there, seven-and-a-half years later.

Step by step I followed my own prompts for considering, choosing, refining – including much smaller amounts of that big chunk of realistic dialogue – listening to the bits as I locked them in (to make sure the language flows), defining the structure, doing the work I call writing fiction, and little by little, 32.2 emerged from the shadows of a disaster.

It started doing what it was supposed to do, and I got less scared.

Until the next time.

**********

The slow approach of some kind of normalcy

Davis greenway on my trike ride, winter 2021

LIFE HAS TO GO ON

It is starting at the opposite end of society: those vaccinated most urgently are the older people, who otherwise have an appalling death toll from Covid-19 if they get sick.

The fear has been very real among those of us with co-morbidities, who in normal times could look forward to a bit of retirement and the presence of children and grandchildren at the end of a life of labor.

This community went from people who had dinner with other people in a catered dining room several times a week to an entire building of people whose food was delivered in takeout containers every day. For almost a year so far. We have accumulated (and tried to recycle) countless containers, with the dining services having trouble, it seems, buying the same container shapes every day.

There is only so creative one can get with plastic takeout boxes.

Why the light at the end of the tunnel?

Because, if all goes well, most of us – of around the 250 people in Independent Living in one main building, 15 cottages, and 16 ‘garden apartments,’ will receive the second dose of the Moderna vaccine this Thursday, and two weeks later will achieve the maximum protection that can offer us.

We’re not sure yet what will change once there are a bunch of us in that state: the precautions will still be in place, a few people won’t have been vaccinated (including some staff – I don’t understand why they are not jumping on the chance to be protected), and the fear that ANY encounter with another human being might end up being terminal will be muted a bit while we wait for the rest of the world to catch up.

A reversal – normally vaccinations are for the young, and we elders have a lifetime of toughness to protect us.

Anyone who was alive for the 1918 flu is now over 100 years old.

I’m writing now because the suspense is at its maximum

None of us want to be the ironic case of the last old person to get Covid-19 and die from it – that won’t happen for a while but it’s worth pondering.

So those of us who believe in vaccines and modern medicine, however imperfect, are being very careful for the next three weeks or so.

I have a doctor’s appointment in March, and it will be the first time I’ve gone off campus feeling safe in over a year.

I desperately need new glasses – but have refused to make optional medical appointments with people who will be close to my face and body while their breathe could be my end.

Ditto dentists – you won’t believe how carefully I have been brushing my teeth so as to avoid any unnecessary visits (and have eschewed the necessary cleanings) for this year: I don’t want someone, even someone masked, gowned, and with a face shield, that near to me.

I have some experience, having caught the flu in 2018 from the only time I’d been out of the house in months, but decided to accompany the husband to his eye-doctor appointment: someone left a flu virus in that waiting room for me.

So the stress level is still high

And we look askance at the crew of men painting our halls and installing new carpets (first upgrade in 20 years) – and going home to their families every night. They need the work, the facility needs the facelift, but we don’t need all those people we’ve never seen before (thanks, guys!) wandering our halls.

This last Friday was the first time testing of all the staff revealed no new cases in quite a few weeks. It may be just random luck.

Or it may be that the staff have already had their two shots + two week wait, and are now as safe as they can be. I hope so, for their sake. They are very nice people. And there are almost as many of them as there are residents (we have higher levels of care in the same building, which increases our staff requirements). 200 or so.

(Still don’t understand why any of them would refuse the vaccine against a deadly disease they could transmit to the older people they work for.)

The public stress changed

From worrying about the election and the devoutly-wished disappearance of the previous mob, to wondering how the current administration is going to manage to reverse so much damage.

But I no longer watch – it’s politics as usual, the grownups are in charge, and I can’t do a thing.

The grownups are at the helm of the current actual focus on getting control of the pandemic. Another place I have limited reach and scope.

Since I’ve blocked all the people who are science-deniers, my only remaining advocacy point is to remind them that THE DISEASE IS MUCH WORSE THAN THE VACCINE.

A few have legitimate concerns; most should just make sure their doctors know their problems, and they are watched for a time after the actual injection to have a quick response if they have the exceedingly rare anaphylactic reaction. EXCEEDINGLY RARE.

But I’m so tired

Months and more months of stress have taken a real toll on the writing (and the other parts of my life, which I try to ignore).

I have only just regained some semblance of a normal sleep schedule with melatonin in tiny amounts at bedtime and my Daylight therapy box in the morning as soon as I get up. Now I’m wondering when I can get off the regimen, because the melatonin always makes me a bit groggy, and that is the enemy of me writing fiction.

A couple of weeks of better sleep is not enough for a year of stress, but I’m getting there.

The work proceeds apace

Yesterday I managed to take all the notes I had accumulated in 2016 on the critical medical topic which is an intricate and ineradicable part of this section of NETHERWORLD’s plot, and make sense of them: they were very badly written in the original source – and that is now behind a paywall!

So I’m feeling proud of myself for documenting everything so well that I was able to figure out what I needed, from what I gathered over four years ago in another state!

When I do research, I carefully retain the link or other source information, in the great fear that I will forget where I found something and fail to attribute it correctly, so my paranoia has served me well.

And some form of exercise occurs occasionally

I got a trike ride, a short one, this weekend – because the outdoor pool has glass in it from a broken table top during last week’s windstorm, and is unusable, even in the mild weather we had (they still haven’t told us how the heck they’re going to clean it up, they who put glass-topped tables near the pool in the first place!).

And I get out of the apartment to pick up lunch or somesuch on Maggie, my MAGnesium Alloy Airwheel S8 (a bicycle seat on a hoverboard – google it) a couple of times a week. Not nearly enough exercise for anyone, even disabled and chronically ill, but all I can manage.

The great outdoors in California in the wintertime is still great.

So that’s the report from a Continuing Care Retirement Community (CCRC) for today

I can feel, on re-reading my words, that the stress is lower.

How goes it with you?

If you are offered the vaccine, and don’t plan to take it, I’m curious how your thinking is going. I promise to be civil.

And otherwise, along with MY children, I hope everyone will be protected by a vaccine as soon as possible – I’m tired of living like this.

Not tired enough NOT to continue to take every precaution, but you know what I mean.

**********

I don’t have to supervise Biden

Photo of the Madrone courtyard at the University Retirement Community showing flowers, the building in the background, and picnic tables
Madrone Courtyard

THIS IS WHY I HAVEN’T BLOGGED

No, not the picture. That is just a photo of part of our lovely campus at the University Retirement Community.

If it’s warm enough, this is where we have our ‘younger women (<= 75)’ First Wednesday lunch every month, a way for the youngest members of URC to meet each other and connect. Since people move here at all ages, it isn’t the newcomers, per se.

But one of our residents decided to start this group, and it has been nice to have lunch with my contemporaries, some of whom have just moved here.

Most people at URC are older than we are.

Which brings me to my first topic: the coronavirus and the vaccine.

Because we live in a community where most residents, from independent living to skilled nursing, are over 75, when it came time for Yolo County to offer residents in Independent Living the coronavirus vaccine, they decided to include those of us under 75, but living here, the vaccine at the same time they vaccinated older residents and offered the vaccine to the whole staff.

We found out and signed up, along with most of the residents, a few days ago.

So, on Jan. 7, the day after the Capitol riots in DC (more about that later), husband and I got the first shot of the Moderna vaccine. We had very minor side effects, and I got an odd one (but so did others): a slightly red, slightly itchy upper arm around the injection site – but over a week after the shot! It went away before I reported it, only lasting a couple of days, but that was unexpected. Which is why I mention it.

We are scheduled for the second shot Feb. 4, four weeks after the first, and, if all goes as expected (management reassured us yesterday, but that means nothing as they have no official notice, no vaccine on hand, and no control – BUT have not been informed of any problems), two weeks after that, or from about Feb. 18, 2021, we will be as protected as this vaccine can make us.

Almost a year since we went into virtual hibernation, we may be able to move about in the world. No one knows how long it will be before our kids qualify – they are late 20s, early 30s – so this place will be more like a bubble or relative safety, and we may be able to socialize more with our peers. But it’s a big first step.

The stress has been hard to take, especially since some people don’t seem capable of keeping their mask over their nose.

The said Jan. 6, 2021 Capitol riots in OUR capital city

Along with most people, we watched horror as the day when a simple procedural count of electoral votes, certified already by each state, were supposed to simply be read into the record!

Now that 45 has been gone, and Joe Biden and Kamala Harris have pledged to uphold the US Constitution (as their predecessor promised, and then failed to do), it is hard to remember the enormous stress it has been to watch and read about the waning days of a wannabe dictator who attempted to reverse a legal election, and tried to get his sycophants to keep him in power via an attempted coup.

It will be a long time before that is all sorted out, but the days from Jan. 6 through Jan. 20, 2021, will not easily be forgotten, as the authorities slowly regained control over a situation that never should have been allowed to happen, and scared the heck out of the rest of us in the process.

The stress, predictably, made it difficult to write fiction – and made it impossible to blog. Anything I wrote might have been proved false within minutes.

I couldn’t.

I couldn’t make myself find some relatively stable and harmless topic, and I couldn’t write about what I was seeing and reading second hand.

Too volatile.

A real rollercoaster ride of ‘this has never happened in my lifetime.’ And my lifetime has included the Cold War, the Vietnam War, the assassination of President John F. Kennedy, and the moon landings.

I’ll slowly recover – because of the title of this post.

The grownups are back in charge of the country.

Not that I could do anything about anything while they were not, except express outrage on FB, forward liberal posts there, and end up blocking or unfriending people who used hate language.

But, like many of us, I could not take my eyes off the trainwreck, even if I managed to limit it to a quick look several times a day into the headlines, and watching the coronavirus death toll.

Biden and Harris have, as the cliche goes, ‘their work cut out for them.’

I think that means that now they have to sew it into something resembling a garment. Or a shroud.

The sympathy for the victims and their families that was not expressed in the past year was given attention before the grownups even took office, in front of the Lincoln Memorial.

The choices for people in charge have, some of them been a bit surprising, but I don’t have a reservation about the selections that I know anything about. If Ben Carson, who doesn’t seem to care about anything, could head HHS, the Biden appointees can learn whatever they need to learn, and at least are people of integrity – and not all white men, by a huge margin over 45’s.

Nothing will be perfect, and not soon.

As there is incredible damage to stem, and then reverse, it won’t be fast.

I want accountability. Silly me. I hope we get some.

But even then, I leave that to the politicians, to the grownups.

I can’t help, and my opinions are not based on knowing enough to offer solutions.

I will sign petitions, such as the one to provide more funding for ME/CFS research, which, had it been done in a timely manner over the last four decades, would have been ready to help the long-covid survivors who end up with a raging post-viral syndrome.

I will vote, and urge people to take seriously both voter registration and voter intimidation before the midterm elections.

I HAVE NO FEAR OF VOTERS.

But removing post boxes so people can’t vote by mail, removing polling sites so they have to wait in line at the few remaining ones for HOURS, and the rampant intimidation of AMERICANS by domestic terrorists so they dare not cast their votes, is WRONG, makes any elections ‘won’ that way illegitimate, and is a nightmare to leave our children.

Anyone scared of legitimate votes is a FASCIST. There seem to be a lot of them.

We have a long way to go on so many fronts that were made so much worse by 45 and his minions.

But I don’t feel I have to be aware of every action any more: legitimate authorities will tackle the problems one by one.

I never was in charge, but now I’m getting out of the fray as much as possible.

I have NETHERWORLD to finish THIS YEAR. If God gives me life and brain.

*****

How have you been affected?

Will you now be able to move on?

*****


Major stress doesn’t just END neatly

A peaceful setting on the greenway, mother with stroller and child

GETTING BACK TO NORMAL?

Outside stress

I told myself that when the Electoral College did their thing, the stress about who the next president will be would lessen.

It did.

But not enough.

There’s a pandemic going on.

I had hoped the arrival of vaccines would help, and it did – until I realized that even though we’re over 70, and living in a care facility, those of us in Independent Living will not qualify for the vaccine for quite a long time. Staff will be ALL vaccinated first – not a bad thing, as they are the ones who DAILY go back into the community.

People in Assisted Living, Memory Support, and Skilled Nursing will be vaccinated.

We will not. Not at first.

And it will be a VERY long time before I don’t have to worry about my children (late 20s, early 30s), because they will be among the last vaccinated, which means their quarantines (and ours) will not end for many months.

Medically-induced stress

I told myself that when I found a new doctor, completing the process of picking one more deliberately than how we found our first Primary Care Physician (PCP) when we moved here over two years ago, and met him or her, and things seemed more to my liking (the first physician was fine, but we are not, it turns out, on quite the same page philosophically as I had hoped), that I could relax.

It did – I had a wonderful first visit yesterday during which all we did was talk, and at the end. I had asked the nurse, ‘Could we do this at the end?’ when I got there, and she agreed with no hesitation (good sign), because I was so stressed about having done that horrible thing, CHANGING YOUR DOCTOR), so that when she took my blood pressure, it was fine (Note to self: make sure I send a note to the cardiologist).

It would have been lower, I’m convinced, if I didn’t have to fight so hard to have the American Heart Association (AHA) guidelines for accurate BP measurement followed.

I get it: they’re busy, and they have to process people through quickly. For most people it doesn’t matter much if the nurse talks to them continuously through the process, they’ve exercised (getting to the doctor’s office DOES constitute exercise) within the past half hour, or they’ve not been allowed to rest quietly – or any of the other guidelines.

But for those of us for whom going to the doctor brings up a whole host of issues, stress significantly raises the measurement taken under not ideal conditions – and that is the number that goes into your permanent medical record.

So that particular medical stress has been lowered – but is not gone. And the contortions I had to go through in my mind and in person left me completely exhausted and unable to write a word yesterday. I couldn’t even nap!

And, of course, my medical system still doesn’t have someone with expertise in ME/CFS I can talk to – I continue to be completely responsible for whatever self-care measures I can find and execute to deal with what, for convenience and so readers can understand because it’s FRESH, is exactly like what the Covid-19 long-haulers are discovering: no one knows enough to help them get themselves back after a virus, and for some it’s been almost a year.

Removing the stress isn’t a panacea

In many ways, it dumps you back into the situation you lived in before the stress started, but at a significantly lowered coping level.

There’s the long-neglected to do list.

There are the problems with money, which for some are an annoyance, but are a major new source of stress for those getting unexpected bills, do not have the expected income, or are even worried whether their investments will be ravaged by the stock market rollercoaster – and they will have to depend on their children to pay the bills because their nest egg will not get them through!

I won’t be able to relax completely about the election until Biden is IN the White House, either – too much nonsense has gone on.

There have been some new health challenges – notably the blood sugar rollercoaster (much better, thank you) – which consumed lots of time and caused much worry. The kind that RAISES blood pressure (yup, all stress reinforces other stress).

I don’t know how to get back to – or to – ‘normal.’

Nobody does.

My resilience has been challenged by 31 years of chronic illness.

And we’re still in lockdown, not particularly conductive to relaxing, abetted by the news that California’s screwed up bigtime. If you look at all the graphs, it is likely much of the soaring covid and covid death rates were NOT helped by Thanksgiving, and we’re about to repeat that with the year-end holidays.

We take it day by day.

But it’s been incredibly hard to write. To create NEW fiction. To find a time during the day when the brain is functional (not just in survival mode) so I can use it.

And ignore the guilt that comes from not using some of that ‘good brain time’ to do things that really should be done, and which I’ve been planning to do in the evenings AFTER writing – something that just keeps not happening.

Be kind to yourself

And everyone else.

Be especially kind to those who have been working because they have to – we have an amazing staff here, but they are human, are working under plague conditions, and have had to live with weekly testing, knowing some of their colleagues have tested positive, and that a mistake on their part might severely damage one of the old people in their care.

And don’t expect to get back to normal easily or quickly.

Because we don’t.

Stress stays there, like a phantom limb, even when it’s technically reduced or gone.

**********

The deadly accumulation of tiny things

I’VE BEEN DOING THE BEST THAT I CAN

For many reasons lately, I have been having trouble blogging, must less writing fiction.

It all came to a head about a week ago, when I realized I was having what I thought might be ‘attacks’ of very low blood sugar – and they scared me.

I’d wake up in the middle of the night, or realize after working for a while, and I hadn’t eaten in a while.

My body would be screaming at me, and I felt as if I would pass out if I didn’t eat something THAT INSTANT.

The process of getting food in me – any food in me – was fraught and frightening: I would start eating something easy like cottage cheese, and not stop until I had consumed a couple hundred calories, and then would sit there in the kitchen, shaking, until it took hold, or diverted the blood from my panicky brain to digesting what I had just eaten, or whatever – but it would leave me trembly for what seemed hours after.

So after several days of this, and on the weekend,

I promised my husband I would contact the doctor, and, as the online appointment page offered me a video visit at 9:45 Monday morning, I took it, and was waiting when the doctor tuned in.

Best visit to a doctor of my life: I hate doctor appointments after over 31 years of a chronic disease that I’ve never had help with, and this time it was in the comfort of my own office and computer, and, through some twist I never figured out, the video took up a very small fraction of my screen, and his head was smaller than a passport photo.

Long story short, as every doctor under the sun (it seems), he wants me to entirely change the way I eat.

I said no. It works for me.

But afterward, I got to thinking, and sent him an email suggesting that since we had a blood glucose meter, I could take measurements for a while at different times of day, and maybe figure out what was going on. Other alternatives would involve a hospital stay – something I’m hoping to avoid right now – and the effort required to change my entire system of eating is not something I would undertake unless all else has failed AND he guaranteed it would work. Not likely.

Let the games begin

I spent the next morning after husband picked up some new supplies (his were from 2013) getting the system to work.

I called our nurse. Took the meter down to her office.

She took it down to Skilled Nursing, where no one is allowed right now who doesn’t work or live there, not even friends and family.

She said the meter didn’t work – gave errors – BUT she brought me back in a tiny plastic meds cup a single drop of the control solution (glucose in solution at a particular concentration), and Maggie and I brought it back to the apartment.

Courtesy of good planning (and luck), I had one of the lithium batteries the device needed, and it worked, and I was able to test the monitor with the control solution drop!

Now for individual measurements

I learned the whole make a hole in yourself and gently squeeze a drop of blood out of your finger thing, which I hope not to have to do ever again after this, and started recording both the measurements, and the things which might affect my blood sugar levels: when I ate, whether I felt particularly shaky, how long it had been since I slept (I take at least three naps a day lately), what I ate (though I’m not planning on altering that, and it was mostly low carb stuff).

It’s a real racket: the test strips are $1 apiece, and you need a new one for each drop you test (unless you mess the drop up, and then the spare works sometimes). The little lancets (poky things) aren’t supposed to be reused. And the control solution (I have some coming in the mail from Walmart) was $15 for two 4oz. bottles. And here’s the kicker: you’re supposed to test your meter once a month (or when you think the results are messed up), AND discard the opened bottle after three months, and I defy anyone to use up that much liquid in three months!

I don’t see how diabetics manage their testing.

In any case, I now have a solid week of about 5-10 measurements a day, and I will sort them out in Excel, graph them, analyze the graph and notes, and send a copy off to the doctor.

But the answer is

that although my blood sugar IS lower when I’m feeling very shaky and unhappy, it is NOT low enough to be classified as clinically low. Even when I felt I had to respond this very instant, it was probably me overreacting.

Now I measure, and then I eat if necessary, but I’ve also relaxed enough to realize it is very uncomfortable, but I’m NOT going to pass out, and even at the worst, I can actually breathe through it and handle it rationally.

Which is where the accumulation of tiny things comes in:

This has not been a normal year.

I needn’t list the things that have happened, or the continual stress of being locked down or the reason for the lockdown.

The worry about whether loved ones were okay has been huge; some were not, which was even worse.

And I’m sure this was my version of covid fatigue: the stress level got so high that a slightly (okay, it was scary and not little) exaggerated feeling of doom accompanied the more frequent occurrence of something uncomfortable and frightening of episodes that have been happening all along.

And I’d been making them worse without realizing it.

Because my brain stops working when I eat, and then I have to take a nap to restore it to even remotely usable conditions, I was postponing eating as long as I could, hoping to get some writing done.

Which led to

So when I finally had to admit I had to eat, we were at full-blown hunger – and the lowest of my normal range blood sugar range – and it took time to recover. A lot of time. Even after eating.

I might have been able to shorten that time had I been willing to eat something with sugar in it, but that also messes with my brain, with consequences sometimes lasting more than 24 hours, and I didn’t want to start down that path. So I accidentally made things much worse – and then freaked out over it.

I told the husband. I told no one else until I talked to the doctor.

We all try not to worry the offspring, right?

But I have been in a high dudgeon state, and of course incapable of writing fiction. OR blogging. Or, indeed, anything except wondering if this was going to be it.

I’m not even sure they would check for low blood sugar if I ended up in an ambulance, and husband wouldn’t be allowed to go in with me. Which added to the worries, as, if it’s really low, and not corrected, you can literally die.

When I had to deal with it because it happened at 3-4am, I was not in the best state to be rational – sleep deprivation does that.

And, as usual, the solution, eating, was putting on weight – and I already have to deal with that, and no, I do NOT seek help from doctors for that: their success rate, long-term, is 2%, though somehow EVERY SINGLE TIME you see one they mention you should lose weight, as if it were something you could decide one night, and have done with by the morning.

So I also have not much to write about or post about.

Us being in the middle of an unchanging physical, global, and electoral nightmare.

And California, which had seemed to be doing okay, is now having most regions almost to the highest pandemic status, including the Greater Sacramento area, and is no more free of covid problems than the rest of the nation.

If you’ve ever done a stress inventory (you should – find one online), I know my stress levels (with an easy life in a nice place and people bringing me dinner every night) are in the DANGER ZONE. I can only imagine what it’s like for others who don’t have our resources, who have to go to work, whose children are in school, who have a relative or friend in the hospital or who work in one.

I apologize for the self-centered nature of the above half-assed post.

It’s all I got right now.

That, and watching the sales graph at Amazon: sold two ebooks this month! After nothing for several months before that. And it isn’t going to get any better until I finish book 2 and revisit the complete marketing problem – from website (prideschildren.com – don’t go; it’s very rough right now), to ads, to finding more reviews (pretty please – if you’ve ever planned to write one, now would be very nice).

I’m really trying to get to the VERY good end of this volume. Can’t wait.

I am glad to put this scare behind me, and hope to be able to create more than a few words of fiction every day, because I can’t wait to get to the end of this one.


************

Let me know how you’re all coping with stress, and if you have stories of how it’s pushed you far out of your comfort zone.


Recommend PC to a friend if you were always planning to do that.

Bye for now. I have no idea when you’ll hear from me again, but I really miss you.


************

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.


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.


Seniors beginning the covid-19 hard part

THE CONSEQUENCES OF SMALL MISTAKES MIGHT BE DEATH

That’s what makes it so scary.

We have now had one staff case of covid-19.

Management sent a memo, said this staff person is not in direct contact with Residents of our retirement community, and that they had done contact tracing with whoever might have been in contact with the staff person. They were waiting for the results.

Today, at our weekly half-hour QuaranTV closed-circuit broadcast, I asked, and was told the tests on the contacts have come back negative. We have not been told how the staff person is – they were home self-isolating a week ago or so, and we have not had any more information.

And a couple in Independent Living

is under their doctor’s care, and self-isolating in their apartment.

Word is they brought the virus in from somewhere they went, which could have been anything: a doctor’s appointment, a trip to the grocery store, dinner in town during the recent reopening (now canceled), or a trip to their Lake Tahoe home for a weekend or a month.

I understand privacy laws.

We will be told only what we need to know.

Which begs one important question in a facility which also has Assisted Living, Skilled Nursing, and Memory Support: can the person(s) whose contacts were traced be trusted to remember everyone they came in contact with?

A major facility rehab is ongoing

Painting, new carpeting, woodwork – the whine of tools is omnipresent.

The workers are doing their best – and need the work.

But I keep seeing people – Residents, staff, workers – who seem to not realize that the mask they are wearing MUST cover the NOSE as well as the mouth. Or is basically useless.

Why so many people are incompetent at that basic task baffles me.

They don’t seem to realize. I’ve seen someone when reminded put the mask up over the nose – only to have it fall off IMMEDIATELY – and then they do nothing.

How do we protect ourselves?

I personally treat the entire world outside our apartment as contaminated with a layer of a fine dust. The dust is invisible. The dust is like the radioactive dust from Chernobyl: invisible but deadly.

“If you could SEE the virus, would you go out?” asks a Facebook post.

Of course not. And if we did, we’d take it more seriously.

But that only includes those who listen to the scientists, and understand the concept that whatever you pick up needs to be delivered, at some time, to your eyes, nose, or mouth – the mucous membranes are their target.

Even just putting on my gear – nametag, mask, phone into plastic sandwich bag into pocket, keys into other pocket, backpack – is the start of the whole ‘you might be contaminated.’ I wash my hands at least twice when I come back: once immediately, and again once I have removed my outer gear, nametag, etc., etc. – just in case.

I don’t know if those who have gotten ill here – staff and Resident – were careless

I’m assuming they were unlucky.

Since we don’t know, AND THERE ARE NO PRECAUTIONS WE AREN’T ALREADY TAKING, it doesn’t really matter.

I won’t worry – I will just continue to do EVERYTHING, because I don’t know what people are thinking out there.

Wash hands. Don’t touch face. Wear mask. Do not give the virus, which you may assume you have picked up somewhere, A RIDE TO YOUR EYES, NOSE, OR MOUTH.

THIS IS STILL THE FIRST WAVE OF THE PANDEMIC

We in the States never defeated the First Wave.

The Reopeners are living in a fairyland.

There is no vaccine.

There is no cure.

The treatments are symptomatic – and don’t fix much.

If you end up in a hospital, you’re already in bad shape.

If you end up on a ventilator, your chances of making it out are abysmal.

An estimated 10% are NOT RECOVERING – still sick after months.

And we’ve now had several cases in our little enclave.

And Yolo County – and most of California – are finally paying attention and closing down, because there are more cases and more deaths – AGAIN.

I’d hate to be one of the unnecessary deaths.

One of the people who were refused treatment.

One who got the virus from someone acting irresponsibly.


It sounds self-centered, but the time will go by, regardless of how I use it. I’m writing. NETHERWORLD continues to get written, polished, and sent out to my lovely beta reader.

Me NOT writing will help no one.

If I’m still around, I will have made progress.


Which reminds me: I promised to leave a summary of the rest of the trilogy – so you know what happens – where it will be made available to anyone who started reading.

In case I don’t make it.


To the lovely person who bought a paperback: thank you! Hope you leave a review.

Some people prefer paper.

I set my ebook and paperback prices so I make around $5 when someone buys either; it seems about right.


Love you all. Drop by and tell me you’re okay.

Alicia