Tag Archives: Hard choices

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It is my very real experience in previous cases that ‘guidelines’ are often years out of date, because, as one doctor told me, “It takes time for the research to be incorporated into the guidelines.”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

**********

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?

**********

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.

**********

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

Can you relate?

What do you expect from your writers?

**********

Loving scenes where the villain wins

HOW TO FEEL RIGHT ABOUT LETTING THE VILLAIN WIN

Some lights are seen better in contrast with dark.

NOT necessarily permanently – I don’t write downers or tragedies – but so you have done a good job when writing something that, in the long run, enhances the story.

A hero is a hero ONLY in comparison to the obstacle overcome.

The DIFFERENCE between the hero’s HIGH and the villain’s LOW is the STAKES of your story.

The answer to every objection is: Does it make the story better?

Even in a long book, you have only so much space to use the whole palette of emotions that go with your story. You don’t get to waffle about – you have to use what you have, and make it squeal.

This means that you have to be confident enough to do what the STORY needs, even when it hurts – or at least feels odd – when you get to the place where you have to write that the wrong character is winning.

For a while, you tell yourself.

Not permanently.

So the ‘winning’ characters have something to overcome that is worth writing about.

But plotting it to happen and writing the scene are different

I knew what I was going into when I chose to start writing this novel trilogy. It is in many ways a fairytale for grownups, something that is highly improbable in the real world.

But I figured out a way to make it come out the way I wanted.

I found a way to make the ending POSSIBLE.

And, as you might expect, it required some finagling to make it interesting and not trivial.

It required making ‘highly improbable’ ALMOST ‘impossible.’

And then doing the writing to make it happen.

Believably.

To me. Who am picky about plausibility.

Because the characters need to change

Some of them do.

And change of direction requires the application of force.

Nobody changes unless they have to.

And these characters had no reason to go looking for change, except that I wanted them to.

The bigger the change, the bigger the applied force needs to be

The applied force is the stakes, and I needed to make the stakes big enough to make a couple of very stubborn characters change, so it’s really their fault.

But then I got to the actual writing

And I found I had to make the reasons for change credible because the characters had turned into people I cared about.

So the actual writing of the lowest scenes not just in the middle novel, but in the whole trilogy, was hard.

Even though I knew it was coming and exactly what was going to happen.

I had to admit that there was no way around the difficulties I plotted in in the first place. Duh!

So I went ahead and wrote the first of these scenes, and it was as hard as I imagined it would be, and harder because I write linearly, and couldn’t postpone doing it now.

I am proud to say I survived

The story survived.

Some version of the characters survived.

The villain got to win.

At least for the time being, but mostly because it is necessary.

If you aren’t writing stakes you care about, I can’t see the point of putting in the kind of work this is taking. Because it is very hard to let the villain get away with things, even temporarily, because it is necessary to create that leverage for change.

And I had to give it the very best writing I could create – and make every tiny step in the win justified – because otherwise the villain is a straw villain, easy to overturn.

I hope it works for my readers after it works for me.

Or you guys are really going to hate me.

**********

How do you feel about this kind of story – as a reader?

If you’re a writer, have you ever had to do the same?

I’ve earned some kind of reward.

**********

When to dump a scene completely

With ice cream, you don’t have to ask where it went!

WHEN IT ISN’T AN INTENSE IMMEDIATE NECESSARY EXPERIENCE

It’s a high bar, wanting only scenes in a novel that are strong enough to leave a reader breathless.

Quietly or dramatically, a scene has to have a reason for being in the story, and that reason has to answer the question: Why is this scene PIVOTAL?

Yes. Every single time.

Scenes accomplish many things at once

The structure and skeleton of a scene offer a place to hang many hats: character development, plot, theme(s), setting, language, the ability to hold a reader’s attention, emotions… I could go on for a long time, or merely post some of my checklists for things which must be considered.

A scene has to be packed with meaning, symbolism, omens, backstory, forewarning, consequences, and costs.

It has to move the story from where it was to where it has to be, a stepping-stone across a great river.

Preferably subtly.

But the scene itself has to have a primary reason to be in the book, and it isn’t as a catch basin for a whole bunch of important little things the author thinks the reader needs to know.

I dropped a scene

I’ve done a lot of things between the complete rough draft and what will be the final complete draft that included rearranging material, moving things to a slightly better scene for them, altering the timelines enough to change the order, switching point of view to a different character, tweaking the goal.

I’ve considered, for each scene, how best to tell its part of the story.

I’ve combine a couple of shorter ones, split some long ones.

I’d have to go back over extensive lists, but I don’t think I’ve completely dumped one before.

It feels weird – but I’m happy I made the decision to ‘kill a darling.’

I was having trouble writing 34.5.

Since I have trouble writing every scene, this wasn’t anything new or startling. I have many ways of writing myself out of these problems, some suitable when it’s the writer who has a previously-unknown problem (the Journal gets a lot of these long explorations of why) and others which work to get around my physical limitations.

I have those checklists to allow me to explore MANY features of a scene in small enough chunks that I can focus on one thing at a time – by the time I’ve gone through all of those, I have the gathered material for that scene all in one place. Then I have systems to organize it. Then it gels. Then I write it.

I was even in a good mood and had had enough sleep.

The material wasn’t compelling as a whole.

There were specific bits that need to be in the book. There were some really nice bits. And there were all those answered questions and placeholder text bits, including some really decent dialogue.

Then I realized that writing this particular scene bored me

And that I wouldn’t be looking forward to rereading that scene when I reread the book, and would probably skip it.

Telling myself the Reader needed the information, presented in a nicely dramatized way, with bells, didn’t work.

And then I really, really looked at the nascent scene, and I admitted to myself that there were 2-3 necessary pieces, which is why I thought I should group them in this scene in the first place, but that it wasn’t enough to do a good job of surrounding them with a scene and let the reader absorb them painlessly.

It won’t surprise you that it was a villain scene – and I’ve given her plenty of room to express her opinions, follow her thoughts, listen to her justifications.

So I made the decision to cut a scene

And immediately knew it was the right decision.

I found a home for those necessary bits in the following scenes and an epigraph which wrote itself. There isn’t anything wrong with them.

And the chapter suddenly got livelier.

I dug into the next scene, and found it compelling, and found a way to make it heartbreaking.

We’re back on track.

This scene should be a doozy. As they should all be, if I had my ‘druthers.

I can always go back and put it in; somehow I don’t think it will be necessary. I’ll leave it up to my beta reader to notice.

**********

I don’t think this is because I write one finished scene at a time; I’ll find out.

Does any of this ring a bell?

**********

When to restart a scene from scratch

Yup, blank.

SOMETIMES YOU CAN’T GET THERE FROM HERE

I gather a lot of pre-written material when I start a scene.

I also have a lot of lists of prompts I fill out which remind me to think of various aspects of a scene, from the internal twist to the various beats to the emotions I wish to invoke in Readers, so I’ve created a lot of new material now that I’m about to write this scene.

And I have one bugaboo, what I call the Old Text (OT), the original polished-but-primitive draft that I wrote when I had the three books in the trilogy plotted out, and wanted to see that I could make it logically from the first line to the last.

The Old Text can be missing, a few paragraphs, a scene in the wrong point of view (pov), or even, in the worst case, a

PERFECT FINISHED COMPLETE SCENE IN THE CORRECT CHARACTER’S POINT OF VIEW.

Except it’s not right.

And every attempt to take what you have and rework it, rearrange it, change it, edit it, tweak it

doesn’t work.

It’s still wrong.

Worse, it’s throwing you off and keeping you from getting into the character’s pov so you can fix things.

For those times you have a secret weapon:

You can choose not to keep ANY of what you wrote before.

Or only a couple of tiny new pieces you just wrote that you know are in the right pov.

Or an image or two, reworded of course.

Or the time/day/date.

Or even the idea of the scene.

But you don’t have to because there is no Scene Police Division

down at writing headquarters.

No one who can make you, encourage you, or even try to persuade you.

Just because you wrote it gives it no rights.

Just because it was finished, complete, polished, and has impeccable grammar and spelling, punctuation, and capitalization, and you worked for days on it way back when you wrote that particular version, it has no integrity or separate solidity: it is just as friable as your grocery list.

With me, it means I am really stuck.

All the journaling in the world can’t fix something that needs to be plowed under and redesigned from the bottom up.

I just redid a scene like this – from a blank page. After getting fairly close to…something.

I had so much new stuff to put into the scene, and such a solid Old Text version, I thought it might be one of the few things that survived from that draft.

Nuh uh.

Maybe if I had published the scene as a story fifteen or twenty years ago when I wrote this particular little gem, and spent days or weeks getting it to be the best I could do back then. It might have been a book I removed from my backlist after getting much better with the newer books.

I’m glad I didn’t publish that older draft.

Even I had the sense to realize it needed a lot of work.

The new version is so much better.

But I hadn’t realized that the OT had so much power.

I didn’t want to start from scratch. I didn’t want to dump everything.

I wasn’t sure I could write something better, or come up with an entirely different version of the original idea.

That’s just the FEAR talking. Trying to protect me from wasted effort (old and new).

So I labeled the old contents ‘draft version’, and left it where I could get to it easily if I needed to swipe something from it.

And I started a blank file with the words: ‘just putting this here so the page isn’t blank’

And I started all over again, paying special attention to how that character operated, felt, saw, listened and wrote it again from the top.

Then I deleted ‘just putting this here so the page isn’t blank’, proceeded with my other steps to get a scene into final usable state, and didn’t insist it contain any of that old but good stuff, and …

It’s finished. It came out far better. I wrote the new version in a day or two, edited and polished it, and it doesn’t look at all like the OT.

I still can’t imagine any amount of tweaking that would have turned the previous grammatically-correct-but-completely-wrong and progress-blocking scene into what I signed off on today.

It hurt. A lot. All that nice clean text!

But sometimes you have no choice but to start from scratch.

**********

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.

**********

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.

**********

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

**********

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.

**********

Death is the joker in the pack

Image of straw hat, and book with blue pen, open; Text: What do you want to leave behind, Alicia Butcher Ehrhardt

QUESTIONS OF LEGACIES HAUNT

I won’t go into detail here, but on June 17th, after we were exhausted from the first Open House (we weren’t there, but we had to get the house into tiptop form), we heard of the sad death of a young woman we had hoped would turn her life around. And the fact that she didn’t or couldn’t has haunted me for the time since.

I ask myself whether I could have done anything, and the real answer is no. Which doesn’t keep me from being sad.

And it is a useless question in a particular case, because it is so final to not be here any more.

Questions of privilege

I will never find out the details, nor does it matter that I do, not even to me. But it made me think about the privilege of being me, even as a woman who has been ill for 28+ years with a still-unknown-etiology disease. The resources I have are not useful to me – but are available to help with symptoms.

But I grew up in a two-parent family, with an education available to me, even to the PhD level. My childhood was no more mildly traumatic than any other – no child gets whatever she really wants or needs, and it wouldn’t be good for her little developing character if she did.

I was surrounded by love, and had extracurriculars such as Girl Guides and piano lessons. I have never been hungry because of the unavailability of food. I have always had medical and dental care. My problems in life are minor and common (other than the omnipresent CFS, and that didn’t happen until I was 40ish).

I have an addictive personality, so I’ve always avoided most alcohol, and all recreational drugs (Note: may be taking medical marijuana in the future for pain; makes me chuckle). Mostly, I don’t like the stupid feeling that comes with stimulants and such, and it’s that feeling that I’m avoiding. I did my small share of experimenting once or twice back in college, found that I hated the sensation in my gut and head, and didn’t repeat. No particular virtue there.

What if you have problems – and NO resources?

What if you have resources you can’t get to? Or they are expensive somehow? Or you perceive them as losing face so severely you reserve them for a ‘last resort’ – and never feel it is last resort time? We all try to protect our futures, and people may not get help because they know how bad it might look later on a resume.

I knew I was privileged – and thought I had earned it. I worked very hard in grad school, never took stupid chances (okay, once or twice). I thought you earned privilege by behaving correctly after you got it. Not messing up. But even as I was not messing up, I was surrounded by a safety net of people and institutions I didn’t want to disappoint – how much of ‘doing the right thing’ is simply that small deviations from the norm are immediately corrected?

My sisters and I always agreed we had the best parents around (by comparison with some of our friends’ parents). No, they weren’t perfect – no parents are – but we won the lottery there, and didn’t realize it.

I did my part, but everything went my way. There was always a path.

I have never been poor or homeless or infected with AIDS or Ebola or TB. I never had an abusive boyfriend. I’ve always had ‘people’ – lots of people. The few times I’ve sought counseling for something, I usually found someone reasonably competent, on my schedule, quickly enough. And it more or less worked, until I’d solved whatever it was, and returned to functionality.

I have, since birth, been solidly middle class.

Oh, and look ‘white’ enough (I am proud of my Mexican heritage – which I didn’t choose or earn, but it doesn’t ‘show’) so no one pays any attention.

Like a nice liberal Catholic, I want everyone to have the basics I take for granted. And that’s nowhere near what happens.

The ‘liberal’ part knows that, if there were no corruption and greed (ha!), there would be a lot more money for needed services.

Well, this administration has brought so many inequalities to light, it is hard to know where to start. Along with compelling pictures of rampant privilege, nepotism, greed, and the Gospel of Prosperity.

But I’ve spent the past couple of weeks wondering what I would have done in the same situation, and whether there is anything (other than voting the right people into office) I can do now. Other than comforting and supporting the living, where possible.

It isn’t enough for me to confront my prejudices and correct them when they’re wrong. And I don’t know what I can do, what with being sick and mostly house-bound. I’ve always known this – and never done anything about it except in trying to behave right in my personal life. Within reason.

The legacy part?

I’ve had the privilege of thinking about my writing, and the books I want to leave behind me. I have the legacy of my family and my children. I hope to be remembered for a while by friends.

And I have promised myself never to forget her. She had both potential and problems, and overcame many things, with much more limited resources than I. Just not all.

Pray for her, and her family and friends. And for the rest of us.


Hard to blog when real life happens.

And it isn’t a request for sympathy for me. Just that you think.

Preparation and then things just click?

Hot air baloon at sunset; text: sailing off into the sunset, Alicia Butcher EhrhardtWHETHER YOU’RE READY OR NOT

And we are so definitely NOT ready.

But the last flooring was installed, the staging ladies have done their thing, and our real estate agent is now our real estate agent (all the advice up front doesn’t count until you sign on the dotted line – at which point all kinds of things start happening, like open houses and a lock box on your front door…).

We haven’t recovered from the trip.

We have no place for our stuff – the stuff we need to function as inhabitants of a house (where is my skillet, and how will I make eggs when the gas isn’t reconnected yet?). Which may be a problem, as the period between when you put a house ‘on the market,’ and the time when you are removing your last belongings so you can hand over the keys, is an unknown variable.

I don’t know where anything is

It happens to everyone, but it is especially hard to deal with when you have ME/CFS and daily brain fog: and now it’s far worse because some of the stuff in this house was put away by someone other than me, in a hurry, and without labeling either the box or the corresponding card in my card file. Or worse still, labeled as ‘miscellaneous.’ Aargh!

I located a few of the critical items in very odd places. Not sure I have everything I need, as distinct from the comforts, even yet.

And the dryer vent, taped by the painter, is loose – so I’m not sure I can do laundry (I’m living with the absolute minimum amount of clothes out).

Everything is to be kept tidy

And by ‘tidy’ we mean the way the staging ladies left it (a model home look), or restorable to that condition on short warning, when someone uses the system to ‘book an appointment.’ Aargh!

Meanwhile, we do have to be allowed to eat. Other Half and his good friend are down there trying to reconnect, safely, the gas to the stove.

But the forever home may be available soon

Don’t know exactly when, as they actually have to get everything they asked us for, and decide whether they want us. It is possible for them to reject us.

And it is possible for us to be legally required to leave our ex-home because it belongs to someone else after all these years, before we have a place to land.

It’s a first-world type problem – and I’m not whining – except complicated by my limitations. Residence Inn America for two months? We probably could survive. Rent or buy an RV? Ditto. I think.

So we’re adjusting.

Again.

And I’m marveling that I’m still standing – and taking a nap every chance I get so that I can be coherent for the next crisis event. Such as talking to the people at our brokerage (Vanguard) and being able to satisfy them that I’m me, so we could transfer money. By phone. Since the money has actually been received at the other end by the right people, I did it.

A bit nerve-wracking: you will be asked a series of questions, based on (?) publicly available information, and if you miss one, you’ll have to go the long route of being identified some other way. I’m still chuckling over one question about a boat we owned. And wondering where husband hid it all these years.

I love Vanguard. They get things done, and always have alternatives. I am currently furious at one of our banks for the way they made a decision (which led to the nerve-wracking phone ID). And at the other for the fraught way they handle wire transfers, as if you were a criminal actively trying to circumvent laws. Why is it that the people the laws are intended to protect always feel the brunt, while the people who should be caught and punished never even feel a thing? Being law-abiding is becoming more difficult every day.

There is a For Sale sign on my yard. After 37 years.

Life is interesting, but I’m finding the watershed point was signing those papers, and I’m strangely free.

That and the deposit wire-transfer going through on the same day is… unexpected.

Off to the Gray Havens.


 

Living in a house for strangers

iPhone, keyboard, notebook on white background. Text: White carpets? Be careful what you start, because you only THINK you're in control. Alicia Butcher Ehrhardt

MY NEW JOB: LIVING WITH WHITE CARPETS

I have acquired a new job: living in a house with white carpets.

We made one of the two choices offered:

  1. Sell the house after cleaning it up and fixing the obvious and/or necessary problems, or
  2. Update the house as much as possible before putting it on the market.

The easy choice: sell more or less as is

Clean things up.

Touch up all the paint – I still have the cans of good quality Benjamin Moore paint in the basement, and a card file with a paint sample for each, and a list of which rooms are painted/trimmed in that color.

Have the carpets cleaned.

Dejunk.

Add a credit to the house price for new flooring to be chosen by the new owners to their taste – and which it would be so much simpler to have installed when the house is empty between us leaving and them moving in.

Put on market.

Live in your own home, only tidier, until it sells.

The hard and expensive choice: upgrades

The lovely staging ladies we hired and the husband decided to go with alternative #2.

They say (and I hope they are right!) that homes that look dated don’t sell – because the homebuyers of today lack the imagination to see their own possessions in a house decorated by and full of the belongings of – someone else.

Our real estate agent said that the division among buyers was about 50/50, and we should do what we wanted to. That many people who might buy a four bedroom house were locals moving up, and would be buying for the school district and for more room for a growing family.

But she seems excited that the upgrades are being done, and is hopeful they will help sell the house more quickly.

Houses that don’t sell can hold up future plans

Which puts us in an interesting position.

Because we are looking for the best fit in a CCRC (continuing care retirement community), and will go to a lot of trouble to pick a specific one (or small number thereof) which will suit us, and they tend to be close to full capacity, we may be on a waiting list for a while.

This means 1) we need to get on that waiting list asap, and 2) we may be living like gypsies in a caravan, with this one sold, and no place to go for sure, for an indefinite amount of time.

After all our planning!

The supposedly accepted method is to wait until they offer you the place you want at the CCRC of your choice, and THEN put your house on the market and sell it in the typical 60-90 days it takes for the CCRC to have the unit you are offered ready for habitation.

The cart has gotten before the horse

On the theory that even if we were doing the ‘accepted method,’ we might as well get started on the known necessary repairs, and we did – but I never expected them to turn us out of our home, and to be living in a house – sans window coverings because the painter wants them gone and houses show better without them (!) – for an indefinite time, with NO unit offered to us for us to move to.

Not exactly sure how it has happened.

Part of it was the wish to get the house to market during the supposed spring selling time frame (which we will have missed).

Another, other houses staying on the market for a long time.

The third – get other people involved, when the one of the homeowners has very little energy and really needs help – and the juggernaut takes hold and roles on.

And now everything we own is in boxes in the basement – to get it out of the way of the carpet installers (here all day yesterday), the kitchen/dining flooring installers (soon), and the painter (thankfully scheduled while we will be away).

Consequences

We’ll be living, for an indeterminate amount of time (hope it isn’t long), in a house with no shades.

And white carpets.

And white walls.

And everyone agreeing that it is much harder to get stains out of white carpets!

Learn from me: you can’t control the juggernaut, and you keep poking away at the things you can control (changing the carpets) before you realize what you’ve done.


Corollary to Murphy’s Law: Anything that can go wrong will, and will cause a lot more work.


Another reminder to do these things sooner rather than later if you want to have any choice in the matter. I can’t imagine doing this ten years from now.


Sympathy and stories gratefully accepted.


 

Think ahead about accessibility in housing

Long flight of steps. Silhouette of human wearing pants. Test: Too many stairs. Think Accessibility. Someone will thank you. Alicia Butcher Ehrhardt

NEVER THOUGHT I’D HAVE TROUBLE WITH STAIRS

And it’s a bit of an exaggeration to think that every single home in the nation should be accessible to people with physical disabilities.

Or is it?

Odd development.

We bought this house when we were both young and childless because it was the ONLY home left in this particular subdivision, the ONLY one with mature trees that the real estate agents showed us, the ONLY one on a quiet cul-de-sac.

I fell in love with the trees.

New construction in New Jersey tends to be on former farmland. That’s because of the tax structure: farmland is encouraged, so vast tracts of land in the Garden State are technically farms, and something is planted often enough to keep this tax designation. Not for me to understand or go into the details of that.

But every once in a while, someone who needs money (probably), maybe as a result of a death in the family and land passing to a younger generation, or need for more McMansions, or whatever, sells a plot of land which is converted to residential and immediately turned into mushrooms: houses dotting the land with no trees around them.

Many of the young urban professionals who then move to the new suburbs are a bit cash-challenged, and they do minimum landscaping, so that years later the developments STILL look like blank canvases – with a few huge houses sticking up, one per acre or so, with a few bushes around the base of each.

Free exercise?

Our house is a split level. With the framed-in attic, it had FIVE levels, joined by FOUR staircases of 7, 7, 7, and 5 steps. We eventually turned that attic level into a fourth bedroom and bath – occupied first by the nanny for the two oldest, then me with the youngest after a couple of problems made it desirable for her and I to sleep together for the first year. After that, the oldest child still at home got the privacy and status of the aerie. Each in turn.

I noticed, even back before kids, that we tended to live on two of the levels – living room/dining room/kitchen plus main bedroom/master bath – and I was already limiting the number of times I’d go down to the basement.

Then I had the first two, and then I got ME/CFS, and things got rapidly worse, and then the third child…

For a healthy young mother who needs lots of exercise, and has a lot of energy, maybe wasting a bunch of it on stairs makes sense. Every time a baby needs changing, a toddler someone to help at the potty, a kid to be reminded of doing homework, a husband or wife to be called to dinner – stairs.

As a nation, we don’t plan ahead for accessibility

Grab bars in showers, clearly helpful for anyone from a young child learning to shower on her own to a mother recovering from a C-section – should be required in every tub/shower enclosure. They aren’t. I have been using the shower door’s towel rack for this for decades, always conscious that it couldn’t take real stress – because it wasn’t designed for that.

Floor plans with hallways wide enough for a wheelchair aren’t built – who could possibly need them?

MOST homes become a trap for the disabled. I can’t tell you the number of days, when the back pain from botched back surgery in 2007 was particularly bad, that I literally crawled up those flights.

And as vertical stability even on good days has become a challenge, how many times I come down one of those short flights backward because one hand holds a few things, while the better right hand grabs the rail – because we have them only on one side of the stairs.

My husband’s mom hard a hard time getting up to the living room as she aged. Was that part of the reason they didn’t come often? I hope not.

Guests from a singing group had the same problem – as we all aged, some had a very hard time (at all the homes in the group), even those four or five steps to a front door became problematic.

So, at a time when some people would like to age in place a little longer, that much-loved home becomes dangerous.

The worst part?

When you go to sell a house, often to much younger people, accessibility features that are too obvious say ‘old’ and ‘dated’ and ‘belongs to someone I don’t want to think about becoming’ – and are literally detriments to a sale.

No one wants to think ahead.

The thought of needing accessibility features some time in the future scares off buyers.

Ours aren’t too obvious – we never installed those grab bars, or added the second handrail on each section of stairs, and don’t have wider hallways (it’s a tract house, lovingly landscaped over the years) or an accessible kitchen.

I’ve never had the energy to insist on making my own home more accessible and convenient for me, since I don’t absolutely have to have a wheelchair yet, and can get around on the bad days by hanging on to things.

Do I want to stay in this house?

We’re past that point now, as I also don’t want to be stuck in this climate, and we don’t need the two extra bedrooms any more, and more and more of my older friends have either moved away or don’t get out much either.

The kids are flown each to a different State of the Union. And as far from each other as possible.

But it’s never really been an option to stay.

We moved in in 1981!

And will move out in 2018.

I don’t have a choice: I have been defeated for a long time. I just didn’t want to admit it. Or rather, I did – at least five years ago – but it’s taken this long (and some life events) to get the husband fully committed to the idea of transitioning into a much smaller apartment in a retirement community with facilities – such as a pool, gym, and daily dinner. And one with, we hope, no accessibility problems.

This time I’m thinking it through, all the way to the possible wheelchair.

There’s a reason old homesteads used to have a suite built on the main floor – the ‘southwest corner’ – in advance of needing it, for a widowed parent or maiden aunt. Good view, warmth – and no stairs.

It’s about time.

Have you thought about accessibility?


Thanks, as usual, to Stencil for the use of up to ten free graphics a month. It’s been fun to pick an image, think up some words, play with their text features, and insert at the beginning something that ‘goes with’ what the post is about.


 

Liberate the writing mind from the tyranny of time

PLAYING WITH TIME IS THE WRITER’S TOOL

Freeing the mind from the constraints of the linear computer screen.

My ‘left brain’ is linear. Orderly. And must eventually win: the words I produce on the screen or page will have to load into the brain, even in chunks, in an orderly fashion.

I call that the tyranny of the chronology. Or the tyranny of time. Tyranny, in any case.

Even if the story is being told non-linearly, with foreshadowing and backstory, and revisits the same events from different points of view, the ORDER of the words in the final product must be a queue: one behind the other.

We are creatures of time, mired in time, stuck in time – and used to dealing with input presented to us, in time.

Half our metaphors and clichés involve time:

A stitch in time saves nine.
In a timely manner.
Time heals all wounds.
Time to die. Time for dinner.
To everything, turn, turn, turn.

Our most common question: What time is it?

We’re born.
We live.
We die.
In that order.

Time is a relentless dimension, going always headlong into the future from the past, with a moment only in the present – and we are dragged along, willy nilly.

So much so that we hardly notice it.

Time is like air, not noticed until there is a lack

The right brain, which doesn’t do things that way, is also dragged along. Even if it takes in many things at one perception, each instant in time will bring a different set, to be perceived and dealt with – if possible – before being assaulted by the next.

This affects writing in many different ways, but especially in giving a power to the words already on the page – in their ordered stream. The left brain resists changing that which is already sorted into a linear order. It did all that work to organize things, and now you want to change their order? It demands to know, Why? It gets in the way of finding a better order, a more coherent whole.

Loosening the grip of time

For me, one of the best ways to stop that linear progression is to go to paper: a fresh sheet of scratch paper invites scribbling. Pencil, pen, colored markers. A neon yellow highlighter. A printed copy of the current version or pieces of older versions invites scissors and tape. And rearranging. Always rearranging. Clumping – and stringing out. Grouping in different ways.

I know there is software for that – to make a screen more like a whiteboard. Maybe the next generation will be comfortable with its freedom, and not notice its inherent limitations: the screen doesn’t allow you to cut it into pieces.

But ‘going to paper’ stops time for me for long enough to see if this fiction has a BETTER timeline in it, a different order for all those perceptions and illuminations of the right mind.

Manipulating time – for story

Always in mind is the idea of how to slip all these bits and pieces of the story into the reader’s head so a coherent whole story can assemble, KNOWING the reader’s mind is different from my own, KNOWING that the story for the reader will be different from my version in many and subtle ways because every head is a whole world, and every world in a mind is different from every other one. Presenting the building blocks in the best way I can think of to invoke the reader’s use of her built-in software.

Overcoming my OWN Resistance to changing anything – to make it better – requires that I manipulate time for my own purposes, which also requires that I step out of the constraints linear time puts on ME.

‘Going to the paper’ does this every time I try it: there is something magical about messing with time, but I have to do it non-linearly, with different tools than my usual ones, and in a way that takes me back, metaphorically, to when it was okay to scribble anything anywhere (and I even had a hard time staying on the paper), before I was truly conscious of time, when there was only ‘now.’

‘Going to the paper’ in real life, too

I have to do a lot of year-end paperwork. It is stressful and confusing, and requires decisions from a mind not functional yet this morning. I can sit here, staring at the screen until the cows come home – and nothing useful will happen.

Making notes on paper, scribbling, adding bits and pieces, and drawing arrows from one piece to another – going to the paper – is the only way I’m going to get through it.

Respecting time

The most important thing a writer can do is to respect the reader’s time – and put nothing into a story that is not strictly necessary.

That said, it has to be in the context of the readers you hope to attract, as time sense is a strong predictor of the kind of books a particular reader wants, and the writer’s is developed by the sum total of everything the writer has ever read.

Pretty big order, there.

I think the most important measurement of respect is that your target readers will never demand back the time they spent reading you. And the ones who are not your ‘tribe’ will accuse you of wasting theirs.

How do you finagle ‘time’?

The major stressor and the Gordian knot

SOMETIMES THE SOLUTION IS OUTSIDE THE BOX

Things get tied in knots; sometimes the only solution to a bad marriage is a divorce. But that applies in other situations:

Teacher/student – this teacher has it in for your kid, for whatever reason, and the only way the kid will survive is switching to a different teacher, or a different school.

Parent/child – the child must leave home to get away from a controlling parent OR the parent must eject the nestling which has turned into a cuckoo bird and is eating the family out of house and home.

Boss/employee – leave that job, if you can, before it eats your soul; fire that employee before she sets the factory on fire.

And one I’ve done once before, in many years in the system: if the main stressor in your life is a particular doctor, switch before they stress you into the heart attack they think they’re protecting you from.

The signs were many.

Doctors have different outlooks on life, differing way of using ‘guidelines,’ different bedside manners.

Because change is so hard for me and others with ME/CFS (usually entails MORE doctor visits, transferring of many records, finding the new person, hoping you don’t have an emergency until you’re comfortable with the new one, getting them to read all your paperwork…), we often stay too long with one who ‘at least fills out the Social Security paperwork.’ I don’t need that any more – but worrying about blowing a gasket (ie, stroke) from an occasional blood pressure spike is a sure way to spend your life worrying about your pressure, which RAISES it.

I had reached the point of considering my home BP measuring device an additional stressor, and the taking of the BP another. But I have friends who have had strokes, and it ain’t pretty.

It reached the breaking point a month or so ago when something (I have an idea now, but no proof) led me to have a BP spike DURING my semi-annual cardiologist visit, in their office. ONE measurement. They refused to take it again (to see if it would be coming down), and instead went to full alert.

Full speed ahead, man the torpedoes!

To make a very long story short, after having an abysmal experience with – and stopping after ten pain-filled, zombie-brained, gut-wrenching (lit.) days – another BP med, I switched cardiologists – to the one I just saw (and had met during one of my hospital excursions and noted he was a breath of fresh air then).

He says, not only don’t worry about it, but don’t measure it! He realized the process had become stressful, but that my record of measurements didn’t show a real problem. He suggested, since I need salt to maintain blood volume, and don’t follow a low-salt cardiac diet, that I might have had too much some night (yes, yes, yes! very possible – when I add salt to the occasional popcorn or nuts!). NO ONE had ever told me it could set off a spike.

He actually listened to my difficulties with tolerating meds, said I’d tried most of the first-line ones, and reacted badly, and that the next line of them would likely have even worse side-effects. But that he didn’t think I needed any.

I see him in six months, and the largest stressor on my list (death due to not taking the doctor-prescribed cardiac meds) vamoosed in a puff of smoke. Plus the secondary stress I was also ignoring: going to that office and that doctor. It’s subtle.

Changing was the right thing to do – and a serious object lesson: listen to your stress level. If a doctor constantly puts you on red alert, consider whether this is the best doctor for you. With the other one, I felt every time that I was defending myself from being put on medication I didn’t need.

Such a relief: I agree.

I should have listened. To myself. We’re not all alike; neither are they.

I was just worried the first one would prejudice the second one, and I would then have to go far afield to find… You can always stress yourself out.

And I learned that the salt I need may cause BP spikes. Good to know – will watch that more carefully.

Update on Pi day 2018: almost alive

JUST SURVIVED ANOTHER SH*T STORM

Concerned about occasional blood pressure spikes, I asked the cardiologist to prescribe something with the fewest side effects possible, and was given a prescription for an angiotensin II receptor antagonist (ARB) called Diovan, which was filled with a generic called Valsartan – and I’ve again lost ten days of my life.

After I’ve had a horrible pain and zombie-brain time with it, I start getting more detailed with my research, and find out the Celebrex (my pain med and ONLY other prescription med, which I finally found after trying about thirty other things) and Valsartan (and not only other ARBs, but also ACE inhibitors and betablockers (my old pal from last year, metoprolol – which contributed to last year’s hell, and which I also won’t take again)) are contraindicated because each drug makes the other drug less effective.

I’m getting very annoyed at people who don’t check drug interactions.

Also, people like me, with ME/CFS, are often sensitive to even small doses of meds. Starting on a SMALL dose would make a lot more sense. Maybe they think it was a small dose. I don’t. Ask my husband about my pain-filled week+. I don’t like to spend a long period of time breathing through pain I can’t seem to get control over, while worrying about the extra load in painkillers and what they will do to me and my poor overloaded liver and kidneys.

Just generally annoyed – and farther behind – AGAIN. It gets tiring. And when they don’t even call back after a week after I reported side effects (they said they would), even more.

I halved the dose, then quartered it, then stopped. Five days later, I’m starting to regain control, and my mind worked last night for a couple of hours. Woo hoo!

And yes, I’m aware I’m two days late for Pi Day, and didn’t get any pie. Hope your life is more even-tempered.

And I’m still worried about those occasional spikes. But no med will help if I CAN’T TAKE IT!