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.

One way to encourage a writer

When you are reaching the end of writing a novel, it looks as if you’ll never finish.

Encouragement comes in odd places:

  • a reader wanting to know when the next one is out
  • sales you didn’t expect, didn’t advertise for
  • the writing going particularly well
  • a tough section written
  • and a review that blows your metaphorical socks off (one gets so jaded).

This morning, my inbox contained a link to that kind of review, and I encourage those who are here for the fiction to take a quick look at the books’ sister site, Pride’s Children . com, and sign up there if they haven’t – because NETHERWORLD will be here early next year, and that encouragement keeps me focused.

An encouraged and supported writer (thanks to all my visitors and commenters and fellow bloggers and friends from FB and GR – you know who you are, and I hope you know how important you are) is a happy writer, and is probably writing much better than a discouraged one.

I don’t buy the drugs-and-alcohol motivated writer narrative (one reason being because my body doesn’t process alcohol fast enough and I don’t tolerate most meds), so I have to go on HAPPINESS, the universal salve.

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Sleep and lowered stress would be nice, too, and research to treat and cure this dratted disease (ME/CFS). I’m doing the best that I can.

Reduced brain fog would be ideal.

I’m doing the best that I can.

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Traveling with a nonstandard mobility device

An Airwheel S8 is a mobility device

THE BIGGEST ADVENTURE IN THREE YEARS

I haven’t posted for a while for a very important reason: traveling to the Boulder area for our son’s and daughter-in-law’s wedding reception. (I am recovering slowly from the trip, and am finding my writing very much more basic this week – bear with me.)

The wedding was a lovely Zoom event a year ago – it wasn’t deemed safe to have it in person before vaccines in the middle of a pandemic – and under Colorado law, the kids could do the actual wedding themselves by signing a form. They chose to do that, and did a wonderful job of vows with a backpacking theme – talking about how and why they packed the items for a trip.

This year, vaccinated and safer, the wedding reception took place in a venue with the Boulder mountains in the background, family and friends from all over present.

The ceremony was out on the grass in the setting sun – I made it to a seat somehow, and was misty-eyed at the very personal and heartfelt words. Big smiles by everyone. They make a great couple, and have been together a long time now.

So we had to get there

Our son had asked if I wanted a mother/son dance after his wife’s father/daughter dance and theirs as a couple, and I said yes.

I can’t stand very long, or walk very far, and am extremely awkward and unstable on my feet.

So of course I said yes – these things are important, and don’t happen very often.

If at all possible, you do them, because regret is the cost of not trying.

We didn’t have time or occasion to practice before, so it was a one-time event.

My secret weapon was Maggie

Maggie (for the magnesium alloy she’s made from, and the maglev motors that run her) is my Emotional Support Robot Mini Riding Horse – and my bionic legs – and my mobility device.

An Airwheel S8, she is a bicycle seat on a hoverboard. We are a proud member of a subgroup on the Electric Unicycle Forum (even though she has two wheels).

She can be used sitting or standing, lasts a long time and distance on one charge, and I use her around the retirement community inside (elevators and long carpeted halls) and outside (on the Davis greenway, sidewalks, and bike paths). I don’t stand – but the kids and others have tried that without problems.

The trick was getting Maggie there and back – on a plane

Without damage.

To Denver International Airport and back to Sacramento.

I follow John Morris’s Wheelchair Travel blog, and knew this wasn’t going to be simple.

Why? For a bunch of reasons:

  • Maggie is not a wheelchair nor a scooter, devices most people are more familiar with as mobility devices.
  • Maggie is electric.
  • Maggie has lithium batteries built in.
  • The batteries cannot be removed – the procedure for replacing one is long and involved.
  • Most devices travel in the cargo hold with the luggage, including my walker of many years, Sylvia.
  • Most people have never seen an Airwheel S8 (I am a ham; I do demos at the drop of a hat, and talk about my mobility device to anyone who evinces the most minor interest).

My greatest fear was showing up at the airport in Sacramento

and having a particular crew (the pilot’s word is final) or counter staff refuse to take her on the plane at all.

The next biggest were having my mobility device damaged during the trip, refused passage on the way back, or become lost baggage. My very sturdy walker has been affected by the many trips she’s been on, and the bracket I put on the front to hold a basket was broken off on a trip long ago. I breathe a sigh of relief every time the walker shows up again while deboarding.

If Maggie stops working (it has happened – this is my second Maggie), she becomes a 32 lb awkwardly shaped piece of metal and plastics that barely rolls.

There have been a number of incidents with cheap lithium batteries causing fires on planes and in other places, so I understand their concern – in principle. But electric wheelchairs travel all the time.

If absolutely necessary, I would have dragged myself all over the wedding venues with my walker. But what would happen to Maggie if I couldn’t take her with me was a big concern, because airports are not a place you can store things and time would be limited (as well as my energy, which is my constant battle to preserve).

Preparation before hand was key

I spent a lot of time a couple weeks prior to the trip (over an hour on the phone) talking to the person the Accessibility phone at the airline had at the other end. We sort of figure out that it would probably work. This person said a ‘note’ would be placed in my file for the trip.

A few days before the trip, I got anxious. I went to my reservation to see if the note said what it was supposed to say. There was no note. The only codes were the ones I had written into the form when buying the tickets – informing the airline that I needed a wheelchair in the airports, and that I can walk enough (hanging onto seatbacks) to get to my seat, so I wouldn’t require the on-board airline wheelchair to get to my seat.

Nothing about Maggie, nonstandard devices, batteries… all the things we discussed. Nothing I could mention to a gate person or counter person.

So I called again – and this time got someone who said she was Accessibility – and didn’t recognize the name of the other person! At the same phone number. Not a good start.

The second person was much more helpful for a specific reason: with a little searching, and knowing the airline website, she was able to find the specific wording which would let me take Maggie onboard, either in the wheelchair closet or in the cargo. I printed it all out, highlighted the relevant sections, and brought it with me.

I didn’t need to use it – but it could have gone the other way.

The airport trip was easier because I have an Assistant again

She was available to drive us and our luggage to the airport when we needed it. And she promised to bring Maggie home if something went wrong and my mobility device wasn’t allowed on the plane. Fortunately, I didn’t end up needing to call her back.

Sacramento was an easy airport to navigate: it was agreed I would use Maggie to get through TSA, and all the way to the gate, where the final decision cabin/cargo hold would be made – by the crew/pilot.

So far so good – and then, at the crowded gate (we were plenty early), the gate person told me the crew said there was no room on board for my device.

First big hurdle

The crew person who came out said there was no room. But I was allowed to go down the ramp to the plane on Maggie.

And at the door, I asked to be allowed to see the closet.

At this point I’m sort of holding up boarding (btw, disabled people are supposed to board before ANYONE, including First Class passengers, VIPs, people with small children – a right more honored in the breach than in the observance), so they let me on (I’m hanging onto anything I can at this point, with Maggie about to go down to the cargo hold), and I see that the only reason they won’t put here there is because it has a bunch of crew luggage.

So I state unaggressively but unambiguously that my wheelchair device has priority over crew luggage. I may have asked if they wanted to see the printout of their website written information; I don’t remember – the counter people didn’t want to see it either.

At that moment one of the pilots stepped out, and asked if he could help. I explained, said Maggie could be picked up with one hand. The flight attendant removed the luggage, the pilot placed Maggie easily in the closet, and the hurdle was over. I am very grateful – but still shaking – as I make my way to my seat, hanging on to seatbacks. My husband dealt with the carry-on luggage, sending the walker to the cargo hold, and putting our other stuff in the overhead bin.

After landing there was a wheelchair waiting for me, so I pushed Maggie in front of me through the very large airport, down to baggage claim (on a train!), the attendant got us to the door, our youngest daughter was waiting in the cell phone parking lot with the car, and the hotel room was actually there (you can bet I had called, prepared them for late arrival, and reminded them I needed an accessible room – but the ride was still spent with me worrying). I made sure to tip the wheelchair attendant very well – he was very helpful and stayed until we were in the car.

The wedding festivities went well

Except for me having zero energy, and being totally wiped out most of the time, everything in Boulder allowed me to participate as much as I could, because our youngest daughter rented a car and did the driving, all of it, and we fit.

At the actual reception venue (not designed at all for disabled people), I either used Maggie as a live cane (she is very stable that way, if a bit too short), or people carried her in for me and I grabbed whatever I could for support, and we managed.

The mother/son dance went incredibly well – I assayed a twirl at the very beginning, and it worked beautifully, so we did a bunch more, and it was really great to dance for the first time in years. I’m hoping someone has video!

The return trip was fraught

for a bunch of reasons, including Denver having a huge number of visitors leaving over the weekend (we were grateful our flight was on Monday).

We got there early. The counter help person took a snapshot, and texted the request for the on-board cabin to the gate. First step accomplished.

But when we navigated the busy airport and TSA and train with another wheelchair attendant, and got to the gate early – there was no one there, and the food venues didn’t have anything I could eat. I ate an Atkins bar, and prepared to wait.

When the gate person showed up, it was a repeat of the first boarding, with none of these people having seen my device (usual), or the form passengers are supposed to supply to go with their device to the hold (they said they had NEVER seen one – it’s on the website), and they started telling me the closet was too small.

Again, very unaggressively, I explained that Federal regulations require a certain size closet, and that Maggie was smaller than those dimensions. They came back with saying that there are many different aircraft, and not all have the closet (even if they have the number of seats that require the closet – 100), and that they didn’t think the closet door was wide enough.

It all felt as if they were trying to prepare me to be disappointed. At this point I’m completely wiped out by the trip, the wedding, the problems at the hotel (the only accessible feature I needed was a shower seat – and it turned out to be coming off the wall!), the physical and mental gymnastics required to be a disabled person in an able world.

Back to me

I managed to pretend to be positive. To do my little demo of how well Maggie serves me. To be polite and chatty with the gate person, the flight attendant who basically told me it probably wouldn’t happen but they were working on it and that the door was too narrow, and the pilot who came out and said all the same things, but that they were going to try.

This time I was allowed to be the first person down the ramp.

When I got there, I was prepared for failure, but of course the closet door was plenty wide (they have to be able to fit a passenger’s folded manual wheelchair into that space), the on-board aisle wheelchair was there, in the closet, and completely folded out of the way – and Maggie went in sideways through the door with space to spare.

I dragged myself to my seat, shaking again, and somehow survived the flight home, the wheelchair from the plane pushing Maggie in front of me, baggage claim, and was lucky enough to have the Lyft driver I arranged for as soon as we were at baggage claim and the suitcases were coming out arrive in three minutes, manage to load all out stuff, and get us home.

Feedback to the airline

Five days later I found the energy to fill out their survey.

I hate those things. They want you to check all kinds of points worded so only a horrible person would complain – but I put enough into the text boxes where allowed to give them a picture of what happened, to say everyone was very nice (they were – even when saying no a lot), and suggested that more on disabled passengers, wheelchairs, the on-board closet, and nonstandard devices should be done in training (knowing they all get periodic passes through it), and submitted. I doubt it will do any good, but you never know – I’ve done what I could.

My husband submitted his version – and he is a very supportive man, and didn’t step in and take over at any point (much appreciated) who knows exactly what I go through – he had some extra comments, again, very polite – and we’ve both done what we can with their awkward survey.

The future – I plan to travel more, and Maggie is an essential part

I hope this post gets shared (and I will ask John Morris if he wants a version for his site) because other people need to be prepared.

It was a constant obstacle course. Things are designed for able-bodied people. Any one of several hundred points on the track could have been the sticking point. Everything that eventually worked could have failed. I am grateful to have gotten there and back – and still exhausted.

Everything takes more energy and time when you are disabled – and you have far less energy than everyone else. Not fair, but it is what it is.

I saw no one else in their own wheelchair in either airport. That was surprising.

I’m sure the system is so daunting most physically disabled people just don’t try it most of the time. The mental strain is significant – and I can see how hard this would have been on someone less coherent than I was (and I was not doing well), or with other problems processing crowds, noise, and roadblocks.

I thought a wheelchair attendant was the key to getting through TSA efficiently (I cannot imagine what shape I would be in after standing in line – sitting on Maggie for any length of time is not great, especially if we aren’t moving), but it isn’t, and I think, after pushing Maggie, live, in front of me through corridors, trains, and elevators, it would be easier if I just rode her, while pushing the walker in front of me. But the attendant was critical in dealing with luggage, saved some of my energy, knew exactly where to go, and would have been helpful had anything gone wrong. Six of one, half a dozen of the other – and tip money very well spent. And an extra pair of hands is nothing to be sneezed at.

But most of all, I am incredibly grateful for those who

have fought all the previous battles:

  • Making sure there is an on-board closet
  • Making sure there is a wheelchair that fits in their aisle to get a passenger who can’t walk to their seat
  • Creating the Americans with Disabilities Act and its protections
  • Creating the Air Carrier Access Act (ACAA), [which] prohibits discrimination in airline service on the basis of disability – and all its protections
  • for other bloggers like John who write about the joys and perils
  • and who provide feedback constantly on how air travel meets or falls short of these ideals for every day travelers.

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Please excuse my lack of editing this down into something shorter and more pithy – I am still not recovered, and this feels below my standards in many ways, but if I don’t get it all down now, much will lose its immediacy.

Please feel free to pass this on.

Please contribute your own thoughts and experiences and suggestions.

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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.

**********

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?

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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.

**********

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?

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Won’t read your self-published book because

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

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

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

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

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

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

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

Because I have some requirements of my READERS:

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

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

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

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

Dune

The Moon is a Harsh Mistress

The Thorn Birds

Great Expectations

A Tale of Two Cities

Lucifer’s Hammer

Jane Eyre

Pride and Prejudice

Huckleberry Finn

Silas Marner

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

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

It helps if they loathe

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

The Lovely Bones [that ending]

Lolita [subject matter]

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

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

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

Anything by Dan Brown

Any number of shades of gray

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

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

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

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

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

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

Typos are not good.

Spelling is actually important.

You don’t read modern Romance novels.

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

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

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

Why am I being this picky?

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

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

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

Experience.

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

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

What about converts?

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

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

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

Oxford commas and all.

**********

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.

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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:

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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.

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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?

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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.

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