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

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

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It is my very real experience in previous cases that ‘guidelines’ are often years out of date, because, as one doctor told me, “It takes time for the research to be incorporated into the guidelines.”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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Finagling past reality for fictional purposes

Will the real bridge AND CITY be insulted?

REALISTIC FICTION STARTS HERE

What it’s like to insert a fictional character into a historical event for the purpose of telling a story.

The basic question is unanswered: how to take over a historical event and change it.

Such as how to write a thriller with someone else as President!

So, it’s fiction, identified exactly as so in the beginning of the books, and mine to do with as I will.

I doubt someone has to get permission from the White House to change the President – or we wouldn’t have President Bartlett and The West Wing.

So I’m worried about nothing.

Except…

The general rule to changing a name has to be avoiding harm

If you are going to say something negative, it might bring a lawsuit if the named person or organization feels it affects their reputation in some way. And even if a court decides they are wrong, and you get an amazing amount of viral publicity out of this (google the Streisand Effect if you don’t remember it), it is going to take a lot of your time, effort, and money to fight such a suit – and there is no guarantee you will win.

Organizations can have in-house lawyers who eat problems like this for lunch. They will bury you easily – nothing personal – and have no mercy.

Please read books on writing and copyright, and know the legal definitions of Libel (Letter – ie, written – mnemonics mine, probably not original) and Slander (Spoken) and ask yourself, as a start, whether YOU would feel libeled or slandered if you were the subject.

If even you are uneasy, it may be easier to change the name that might get offended.

And you might have to change that to something that is significantly different in enough ways that no reasonable person would be offended (unpredictable).

Where’s this coming from?

For the purpose of NETHERWORLD, I sort of have to insult a famous movie or two, and some actors – in a minor way.

The insult consists in taking away an earned award – and awarding it to someone else, another movie.

The problem stems from everyone’s ‘knowledge’ of how Hollywood works, and what the major awards are from which organizations.

In the same way that President Bartlett is less interesting if he is Superintendent Bartlett of an unnamed or fictitious school district, an actor getting a life-changing nomination for, say, an Academy Award is more interesting than if I make up an organization called FCBM and award my character their Best Actor award.

Along with ‘The White House’ you get an amazing amount of the reader’s foreknowledge of how things work there – which saves a lot of words and explanations.

Along with ‘an Oscar’ you get the same kind of response – red carpet, photographers, exotic borrowed clothing for beautiful women… And the whole suspense thing dragged out as long as possible, followed by one winner and a lot of gracious losers who were honored to be nominated. It’s in your head already, and a writer just needs to mention a few points to trigger a full-blown award ceremony in your mind.

Why do I even bother worrying about this kind of stuff?

Well, first because I’m a worrier.

Second, because I want that identification and value from the awards. I agree with the organizations and the individuals that they are worth a great deal in a career.

Third, because the last thing I need in my state of energy and illness and retirement is some organization getting its panties in a twist because I, well, lied.

Fourth, because I hope to be famous and well-read (not synonymous) some day, I want to do it right, and not leave a mess for my heirs.

Fifth, because, as a writer, it’s my job.

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Have you had to face this choice? If so, how did you handle it? Have there been repercussions?

As a reader, have you ever wondered if the author has stepped over the line? Care to share?

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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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The necessary odd story pivot scene

WHEN YOU DIDN’T REALIZE HOW IMPORTANT A SCENE WAS

I write these posts when I get an epiphany (and interestingly enough, it is set right before the real Feast of the Epiphany, January 6th, 2006).

I did what I always do, and gathered enormous amount of material related to the scene in progress – and went through my usual process of trying to turn the most important parts of what the Reader needs to know at this point into a coherent scene.

Almost always when I get to this point in my writing process (and I’ve written much about that), the scene almost self-organizes, includes some of the bits of dialogue I’ve developed during the process, and gives me trouble until I get it written.

Then I clean it up, check against my lists, run it through AutoCrit, and am usually happy to move to the next one.

And occasionally I get massively stuck

Which drives me crazy, and then drives me to picking apart what I’ve done, writing in my Fear Journal, and generally making a mess of everything.

Until suddenly the subconscious hits me upside the head with a ten foot Pole (to thoroughly mix metaphors), and I somehow figure out what’s wrong.

And then add it to another list: THINGS I SHOULD HAVE KNOWN.

Or at least expected!

Which are embarrassingly obvious after that point.

Sigh.

Endings and beginnings are fraught

This scene is essentially the last one in this section of the plot. I knew I needed it, structurally, and threw it in, moved some content around, and left it as a stub in my very detailed Scene list in the Dramatica file.

But I did NOT have a rough draft (the very rough draft of everything I have has been proof of my ability to create a story from nothing, and still serves as an anachronistic paper map to the path) for this scene.

Because, in many ways, I was still learning plotting when I finished the first plot (for Dramatica initiates, had my storyform down to 1) and wrote the rough draft to flesh out the ideas. Only Sandy, my long-suffering writing partner at the turn of the century, has seen the rough draft – and I hope she’s forgotten.

The storyform was then revised permanently in the great Reorganization of 2007.

So, I had somehow known SOMETHING WAS NECESSARY HERE,

thrown it into the mix, and moved on to more important things, such as writing PURGATORY.

And of course that’s what landmines are for: to make you sit up and pay attention.

To put this all into something more understandable: my usual process led me to gather enough material for this important transition pivot, but I hadn’t realized it was an important scene.

I thought it was a simple ‘cleanup and move on’ scene.

And of course it did no such thing as self-assemble.

The important ones on whatever scale never do.

Because they’re something new, and you haven’t done it quite that way before, and your subconscious doesn’t know HOW.

So, no template. So, no assembly possible.

And then, in the wondering and thinking and journaling that goes about when I get stuck in these little quagmires, I suddenly realized that we had reached the top of one mountain, the view was spectacular in all directions (see image), and it was going to matter, a lot, exactly how we got down.

For specifics, and so you might recognize it later, we move from the Czech Republic to Ireland. Over the course of a couple bits in several scenes.

And it is a major turning point in not only this chapter, but this book, and the whole trilogy, because the bottom has been hit, and the Reader doesn’t yet know how the characters are going to climb out, because climb out they must.

Apologizing for the contradictory images and the many cliches, I go now to write this scene, somehow, because I have to.

And that’s not bad.

**********

As a question, do you remember your turning points, and how wobbly they felt?

**********

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.

**********

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.

**********

Is deep research a writer’s peril?

RESEARCH IS GOOD, RIGHT?

Writers like me spend a LOT of time doing research to set a novel in time and place, to select the best time of day for a scene, to subtly (we hope) slip a reader into an alternate reality where we are going to tell a story that should keep the reader turning pages far into the night.

To create a world that the characters and the reader can explore for a certain distance off the main story path, we have to know a LOT more than the reader, or the shallowness of the setting will show through the words somewhere, and the lack of fit among all the pieces set down as background will leak through into the reader’s subconscious, taking the reader out of the story to wonder ‘if that could even happen.’

NETHERWORLD has several movies in it, and my current section is the shooting of a movie based on certain parts and unanswered questions in the life of the Reverend Charles Lutwidge Dodgson, aka Lewis Carroll, author of what is commonly known as ‘the Alice books’:

Alice’s Adventures in Wonderland, and

Through the Looking-Glass, and What Alice Found There.

The amount of ‘information’ out there on this popular author (and mathematics teacher at Christ College, Oxford) is staggering.

There are entire societies dedicated to his books, his life, his work.

He is a well-known historical character, and many others have staked their reputations on writing about him.

What’s my motivation?

Even non-actors have seen an actor in a movie ask the director, What’s my motivation?

Because HOW you say something, in fact, how you use your whole body to say something, depends on WHY you say it, the motivation that gives the lines written by the scriptwriter a connection to the whole world of the movie.

Good actors go much deeper than that to create their own version of a character, to use their time on screen to make us believe the character so deeply that it’s a shock to see that actor – in a different role! “But he was so good at…” is a common reaction.

A good movie has more

The motivation for making that movie at all, for expending what can be millions of dollars on a particular story, for bringing that story to a fully-realized version that may some day be an immersive 3-D experience for viewers who participate in the movie as a character (we’re getting close with virtual reality – it’s only a matter of sufficient processing power in computers), depends on whether the investment can be justified, made to pay because there are so many people, worldwide, who want to watch (and later, to be).

Go on about how the good stories are distillations of an internally consistent process that requires knowing all the possibilities – and choosing the ‘best’ for the gut of the movie. And the actors work hard at figuring out why.

Which brings me full circle to research

And a character of mine, an actor, doing the research for a role he will play, but deep research, research that goes beyond reading the materials handed to him, or discovered in the easy-to-get-to online sources such as Wikipedia (a huge resource I support every year).

But the characters all come from me, so if they need to do research, guess who’s doing it for them?

It takes time.

It takes time away from the writing. That’s the dangerous part.

It is real research, research into primary sources such as biographies, sometimes histories.

And it is research that has to be stored, savored, coordinated (all those sources don’t agree with each other), until it is used to produce action in the character in the novel – and writing of that action by the author of the character in the novel.

Well, I have been down the rabbit hole again. Found all kinds of fascinating things, some of which I did not dig deep enough to find when I set this section of NETHERWORLD up, years ago. The slow brain makes it even slower.

And now, darn it, I have to figure out how to use all that research to give the character his motivation, and the readers something that keeps them turning pages late into the night.

My kind of author works hard for the readers she craves.

We aim to please.

***********

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.

**********

Tagline, logline, pitch are the hardest writing ever

A PLOTTER SHIFTS WORD ONE TO CHANGE WORD LAST

One of the hardest tasks a novelist faces is answering the question:

“What is your book about?”

And every writer will face that over and over and over.

I’ve saved this post from Writers in the Storm since 2013.

When the novel you’re trying to describe is going to be as long as Gone With the Wind, and tops out over the course of a trilogy at around a half-million words, reducing ‘about’ to a few words is a feat that brings most writers to their knees.

The lucky ones, traditionally published, probably don’t have to/get to make these decisions (for which they trade complete control of their work and pitiful royalties forever) – because their publisher makes the decisions for them (usually without much input from the writer), and then, again for the lucky ones, uses the results to market the book.

I’ve known since the beginning

Which is why I spent a long time learning exactly how to achieve the ending I wanted for Pride’s Children: and ran scenarios from beginning to end over and over until the beginning made the ending, in my mind, inevitable – and I was ready to write the definitive version.

The process is a time loop for plotters like me, and doesn’t determine the words readers will ultimately get – only the story that I want to leave in their minds, the life lived, the consequences of the choices, the necessary paths.

As in a play, what the theater-goers see as spontaneous and happening before their very eyes needs to be so completely memorized and rehearsed that the actors never say a word out ot of character.

Other people write differently; this is how I do it.

What I’m trying to say here is that I have many versions of tagline, logline, and pitch, created and struggled with over the years since 2000, but I’ve never comfortably answered the question of ‘about’ when asked, and stutter like an unprepared schoolgirl when it comes up.

But I hadn’t dared. Which seems silly.

Those who forget the past (or ignore it) are condemned to repeat it

All that happens is you have to keep doing it, over and over, like Groundhog Day or Russian Doll, because the question doesn’t go away.

Can’t go away – as long as there are readers.

Why now, halfway through NETHERWORLD?

Because I am exhausted from fighting this particular battle, and stuck in the deep chasm of having to write what I planned to write way back then.

Because challenges not faced come back to haunt you.

And because I think I got it.

Finally.

Sidetrack for a minute into the writer’s greatest fear: Appearing ridiculous

Also sometimes known as biting off more than you can chew.

And choking on it.

But what I didn’t know in 2000, when what I’m about to post was almost as clear as it is now, except that I wasn’t sure, hadn’t put in the hard work to make sure, that I could come anywhere near to achieving what I was setting out to do.

As you probably know, mere appearance never works.

Failure is fine – there is no shame in attempting to become an astronaut, and not making the cut (I did, and didn’t). But you have to try, and you can’t skip steps. And you can’t wish for proficiency when what you need to do is find a way to learn (ie, the 10,000 hours trope, which is really a lot more hours if that’s what it takes).

Delusions of grandeur, Impostor Syndrome, Fear of Failing

They take their toll.

Why does it matter so much?

Because the world has removed so much of what I can do that what’s left is pitiful.

Because I have this one thing that I value, that keeps me sane, called writing.

And where I have all the control and all the responsibility, because not a word goes out without my say-so.

So I thought about all of this, and worked on it for months, and then let it sit.

I’m ready to let them be public, even though some will not be fully realized until the end of Book #3:

**********

Tagline: Pride’s Children is

The Great American Love Story.

Logline:

To safeguard a powerful actor, a damaged writer must first salvage herself.

Pitch:

When a reclusive bestselling novelist crosses paths with the rising actor of his generation, she finds her capacity for obsession is not dead. The friendship that develops when his next movie films near her rural refuge, and he fulfills his promise to visit, creates a challenging bond that threatens to destroy her. But when America’s Sweetheart decides she’s the one who will engender with him Hollywood’s supreme dynasty, can the writer navigate the razor’s edge from friendship to forever love, and save his unborn children?

Mission statement: what you are trying to achieve

To make the mainstream reader live three lives so closely from the inside, right behind the eyeballs, that reading Pride’s Children is a roller-coaster ride which makes the ending inevitable and utterly believable.

**********

For better or worse, they are now on record.

The writing proceeds.

The writer’s Kindergarten: cut and paste

WHEN STUCK I GO BACK TO BASICS

And I’m writing this post now for two reasons:

  1. I just had to go through this – again – and other writers might need the same trick
  2. When I woke up this morning and reached for something on my desk, I disturbed the page I used (photo above), scattered all the little pieces of paper, and realized I don’t need to keep them around forever, even if they did rescue me.

I’m an extreme plotter by nature and by practice and by brain damage.

Things have to be organized so I know what goes in each scene, because I can only work with the content of ONE scene at a time (and yes, if you’re wondering, I have used this trick on paragraphs, beats, and scenes as well, when my brain refused to do the organizing internally).

When I got to the current piece in the middle of the WIP, I realized that, inexplicably when I stared at it, the next scene was NOT ready for my ‘process.’

I came to a standstill

For several days.

Abortive attempts to write the next scene failed to make that scene gel, despite having a title and the usual nubs I use to attach words.

Since I was worrying about politics, and in the middle of getting vaccinated for the coronavirus, it took me a while to track down the reason: when I was doing the Great Reorganization of 2007 (GR07), I had had the same reluctance, created something that sort of worked at the time (a list of scenes covering what would happen in this part of the story), and decided to DEAL WITH IT LATER.

Unusual for me, but I was trying to get to the end of GR07, we had half the way to go, and I only had a few more days of the concentrated time I had been saving for the reorganization.

I believe in football American style they cause it punting.

In 2007 I moved on

Never thinking that it would be 2021 when I got to this point in the writing.

I was young(er). Naive(er).

Trying desperately to take that original rough (very rough) first draft of the whole story to the next level – which required the complete reorganization AND a committed devotion to upping the quality of my writing (no, you are never going to see that draft).

and it worked

I moved on. GR07 became the reality.

By dint of work, the writing problems got solved one by one.

Pride’s Children PURGATORY was written and published in 2015 (yeah, I’m slow), and I immediately moved on to NETHERWORLD.

I believe they call it a poison pill

Maybe not so bad.

But a buried little landmine all the same.

Because there was a reason. I know it now and I knew it then: this piece was going to be very hard to write.

And, as is usual with such, incredibly important.

I couldn’t handle it in 2000, when the story came to me.

I couldn’t handle it in 2007, except to realize there was no way around it, and I would have to deal with it during the writing of the second book (nameless at that point).

And I couldn’t handle it at first when it got to be late 2020 and I hit the red flag marking the mine.

I couldn’t even have written this post.

You can’t skimp on the hard parts when you write

The hard parts are WHY you, and not someone else, is telling this story.

The hard parts are where your writing should shine, and, given enough work and time, where they will.

If your story doesn’t have hard parts well executed in it, it’s not going to be the best book you can write.

Because you shirked.

I don’t shirk.

I kick and scream and complain and try to find ways around the roadblock and hope some insight will just remove it.

And then I admit it needs the work, and I do it.

On this one I had to go back to Kindergarten

Yup. Basics. Writing things on single lines. And cutting the sheet into real-life strips of paper.

And rearranging those strips, edited as necessary (in pencil), into the RIGHT order, with the right words, plus any surrounding fill text, until the whole emerged.

Somehow.

That’s the level I have to go back to when things get really bolloxed up for whatever reason.

Eventually, it works, and I find it all amusing. Sometimes I blog about it.

But you’d think that by now I’d be out of Kindergarten, wouldn’t you?

**********

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.

**********