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.

Resetting your writing after a break

AND YOU HAVE TO GET BACK TO WORK

Even when there are still aftershocks to contend with, and the normal has skittered sideways a bit, there is a time when you can’t keep reacting to interruptions constantly with the fight or flight response – and you have to settle down and figure out where you are and what has changed and what has not.

And, in my case, get back to writing.

I labelled a file ‘REDEFINING my life at URC >5/24/19’ and set to work.

Where was I? What was I doing? What was next? These are questions which I’ve been attempting to answer on the fly just to get some writing done in the interim.

But I promised myself I’d do something more organized an more formal asap.

The time is now – if you can

Otherwise the trial will fail – and you’ll get endless opportunities to try again.

But eventually it happens.

You start to realize you’d forgotten many of your own notes. But there they are. And you forgot your own plotting decisions – which will have to be redone, except… here is the file.

I do this periodically.


From October 2012:

Jamming the creative process: RESET to break the jam

Sometimes what keeps me from writing is not procrastination nor ego nor fear.

It is simply that ‘things’ – writing, life, house, … – have become so disorganized (and behind) that I can’t think, much less be creative.

Time gets spent, not in getting things done, but in thinking about getting things done. Thoughts go round and round, never settling long enough in one area to get that area started, much less finished.

How is the creative process affected?

By its main requirement: creating requires a free and nimble mind.

No further writing or editing on the WIP was getting any attention of QUALITY. Scheduling time for writing, blocking the internet by using Freedom, and all other methods aimed at the symptoms, rather than at the root cause – logjam – FAILED. Quite miserably.

The problem is analogous to computer mainframe usage in the good old days, when, to avoid a single user glutting the machine, the computer would ‘roll out’ an image of the core with a particular user’s program and all the user’s data, and ‘roll in’ someone else’s program and data. (Rolling in and out used a small amount of CPU time.)

Then it would compute for a while, and repeat the process with the next user in the priority list. If the algorithm wasn’t managed carefully, or there were too many users being allowed into the queue, the machine could get stuck in a place where all that was happening was sequential ‘roll out’, ‘roll in’ – but no actual work got done before it was time for the next. All the CPU’s time was being used to manage sequencing of jobs, none to doing the actual jobs.

No one’s job got done – and the CPU was busy all the time.

That is how my brain feels when things get too messy.

I can’t actually roll a job in and get a significant part of it done – the competing jobs are clamoring for brain/CPU time.

At this point the only thing to do is declare a reset – everything stops. Then only the top job or two are allowed any traction (typically one of these jobs is ‘TAXES’), everything else is blocked out, and, after clearing the logjam (i.e., ‘Filing taxes’), work is evaluated, rescheduled, cleaned up, dejunked, and otherwise processed before resetting the queue.

Something innocuous can start the jam: a visitor blows into town and occupies prime time space for a day or two (with, for us CFS folk, the several-day recovery that is non-negotiable). Or a new, shiny program beckons, promising to solve some long-standing problem and make future workflow more efficient. Or tax planning requires that all charitable contributions to be charged to the current fiscal year be RECEIVED by the intended organization by Dec. 31, not just MAILED (as it used to be), moving the paperwork time into the Christmas time-frame with a vengeance (instead of being done in that nice post-Christmas lull before New Year’s Eve).

Or [fill in here the life events that, by themselves, could have been handled, but collided with… to create the felt-like effect of a logjam, interlocked fibers].

It doesn’t matter what caused mine this time.

If you’re really curious – ask. And be prepared for long tale of woe…!

Ahem! The solution is to RESET – and that is what I’m doing.

So: I absolve myself of guilt (no one would do this to herself ON PURPOSE), and RESET. I put the editing on hold for as long as this one takes, get extra rest, do the top project or two.

And: we’re back in the writing business (I’m assuming this post – except for the mixed metaphors – shows coherent thought).

Editing sounds positively enticing – I can’t wait to see the final version of the current scene.


And how does that connect to what I’m doing in 2019?

Current editing is Scene 26.2 in NETHERWORLD.

Current writing is Scene 26.3.

And I would say the current tale of woe is the continuing saga of replacing things we had in New Jersey that worked fine (such as doctors and driver’s licenses) but we still don’t have here. One by one.

And I no longer do taxes since hubby retired!!!

But I’m writing. And reconnected with most of my research and organization files. And stuff I didn’t even remember was there. Phew – it would have been a lot of work to re-do some of that!

What do YOU do when you need to reset YOUR life?

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Can you relate to imperfect characters?

HOW FAR MUST YOU MORPH?

Readers have always been able to switch gender; well, female readers have often had to – there wasn’t much to read with positive heroines when I was growing up, not in popular fiction – it’s amazing the number of women scientists who pay tribute to Nancy Drew in their background!

I’m sure the number is dropping, because there are more role models, and some writers deliberately create unrealistically powerful young women as characters, hoping to up the ante. (Yes, I’m perfectly aware of all the advances made in opportunities for women; but that the situation for women in physics, for example, is not much different from what it was in the 1970s when I was in grad school.)

The ability to imagine yourself as a shape-shifter or an alien is part of being a reader – and even more important when a lot of the characters are not like you.

Diversity is the Holy Grail

Though more honored in the breach than in the observance, still.

And readers are only willing to go so far before they’re not interested, requiring a modicum of something they can identify with.


Which brings up a post from late 2012:

Does your character make readers uncomfortable?

When I set out to tell the story of Pride’s Children, I was originally driven by a sense of the unfairness of society toward those who have most need of its kindness.

Specifically, your DISABLED character?

There are two USUAL ways to deal with disability in a character: as a decoration or as a problem.

The first – a ‘feature’ of a character – gets mentioned every once in a while, but doesn’t seem to stop the character from doing most of the things ‘normal’ able people do. And it mostly leads that character to be a secondary character, a sidekick, the ‘friend in the wheelchair.’

The second leads to ‘inspiration p0rn’ (avoiding search engine problems here), and the solving of the ‘problem’ consumes the space dedicated to the story, with inspirational results – problem solved – or, sometimes, the character’s death (in a disturbing trend, by suicide while making life easier for those left behind).

Ignore the fact that suicide has a horrible effect on the people left behind. Most of us know of someone close to whom that has happened, and know they would do almost anything if they could go back in time and help.

Disabilities in real life

Disabilities are far more abundant than people think. If you count all disabilities – and I do, of course – estimates run over 20%. Don’t forget the invisible ones: FM, mental health issues, pain, CFS, non-visible genetic ‘abnormalities,’ a thousand things that make life difficult for the disabled person, but generate wrath in observers who watch them use the handicap parking space. Don’t forget old age and its common memory and mobility problems.

The counting is made difficult because of a human tendency to hide problems if it is at all possible, so you will not be ‘different’ or ‘other,’ and attract unwanted attention. Presumably there was some evolutionary benefit to getting rid of tribe members who would slow you down when your tribe was in the hunter/gatherer phase (a rather long time ago).

We ‘pass’ for normal/able as long as we possibly can, which also makes us suddenly appear very disabled when we can’t pretend any more.

Animals do it, too – everyone knows of a pet who didn’t let its owner know something was wrong until it was far too late to help. Wild animals do it so as not to appear vulnerable, as the weak and the sick are noted as easy prey.

But there is a different way for a writer: reality

I have taken the step of writing a disabled MAIN character, with a significant disability, which she ignores as much as possible, and bows to when inevitable.

For this disabled character, writing is a job – and she’s been successful at it, very slowly – and by staying hidden from the world.

An Amazon reviewer:

…while much of the plot centers on the cautious romance, Pride’s Children is also about a writer’s way of interacting with the world, living with a chronic condition (CFS – … I realized that I couldn’t think of any book I’d read, recently, involving a character with a disability or chronic illness – a significant hole in terms of diversity), and the struggle to remain balanced and kind when new people and routines enter one’s carefully-ordered sanctuary…

Disability is a learning experience

Those who are or become disabled have a steep learning curve: everything is harder. Moving, learning, thinking, being independent, even making new friends – all these are more difficult the farther a character is from the norm.

And the effects are interwoven: difficulty reading means trouble holding a job, getting to that job on public transportation or by learning to drive. No disability is purely one thing you cannot do.

There are few disabled characters in fiction (which is why they stand out) because writing them is extra effort. It’s easier to write about kickass heroes and heroines who tough it out through thick and thin and keep on ticking.

Just tonight we watched, in the same show, a character get stabbed in the back by an enormous kitchen knife embedded at least four inches by the blood shown carefully on the blade when it was pulled out by the stabbed character, who then went on to limp a bit while he walked around, interacted, and finally was not shot by the police detective – and who survived with no visible effects by a short time afterward; and a character poked at in the stomach by a little knife who died instantly. Neither of these seemed at all realistic – but the plot required one survivor to talk and talk, and the other to be removed quickly from the scene.

In the same way, disability in fiction is mentioned when necessary to make a quick plot point – but not there pervasively.

FICTION = EMPATHY

I have written about how properly-constructed fiction is uniquely helpful in creating empathy in humans because it allows them to live alongside a character the life affected by the choices the author has made (type ’empathy’ into my search box).

They do, however, have to read said fiction, which means it has to be surrounded by the best entertainment the writer can provide.

I’m not surprised there aren’t more disabled characters, but I’m disappointed that indie isn’t more of a place where, since the big publishers are not supervising the product, there are more disabled, diverse, and simply ‘different’ characters and stories.

But there is that pesky thing about having to write well to sneak the empathy bits in under the radar. It takes more space, more words, more time.

It is MUCH harder to market.

I still think it’s worth it.


Do chronically ill/disabled characters make you squirm?

Still writing with ME/CFS years later

THE MORE THINGS CHANGE, THE MORE THEY DON’T

This is ME/CFS month again, for my nth time – and May 12th is ME Awareness Day again – as I’ve blogged about for several years now (since we got more activists and activism going, including Jen Brea’s Oscar-nominated documentary, UNREST).

And nothing much has changed – I’m still sick all the time (that’s what chronic means), and have no energy, and don’t get much done, and don’t get what I want to do done, and all that jazz.

So I found a wayback post from Feb. 2013 that describes almost exactly the same thing I still live with. No capacity to learn – or rather, no capacity to retain enough energy to make good decisions.

And I’m six years older, which doesn’t help (unless you’re 13 and desperately want to get away from home). We ME/CFSers are not spared the vicissitudes of aging, and are probably much less capable of putting in the effort that might stave off the ravages of time (exercise, putting energy into good living and good eating, etc.) than those whose life circumstances are easier.

I say easiER, rather than easy, because Life isn’t ever easy (ask any cosseted princess).

Remember I don’t do much editing on these oldies but goodies, but it is proof of nothing much changing (except moving to California!!!) yet.

I’ll let you be the very first to know if something improves!


Writing with ME/CFS #1 – surfing the web for THE ANSWER

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CAUTION: These posts tagged CFS are a product of my struggle to write in spite of a chronic illness that has brain fog as a side effect. They are probably not interesting except to people who live with/try to write under similar circumstances. They are not intended to be whiny – though they will often sound that way. They are intended to be factual, and to help me find workarounds.

I wouldn’t bother except this is my blog, and I need an outlet, and a small subset of readers may find something helpful. Writing helps me sort things out. You have been warned! Welcome!

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The mornings when the psychic energy to block the web is missing,

I roam the small set of sites I follow, looking for someone else to give me words to read.

Today’s excuse was that DH called me from work before my brain was on: he’d left important papers in the front hall and a frantic romp through two computers and a memory stick were required to email him usable copies. Other days it’s been a call from a doctor’s office requiring me to do something immediately, or a call from my dad needing a bank transfer…

I’m seeing a pattern here: whatever the attention-consumer is must be dealt with RIGHT NOW. PWCs (persons with CFS) have a much smaller amount of usable psychic energy – which I will define as the ability to MAKE myself do something as well as the ability to ACTUALLY do something – than normal people. It’s part of the brain-fog problem. If I could jot the interruption on a sticky or my ‘gathering’ sheet or type it into Things – and deal with it in the normal course of business (maybe today, maybe not until next month), it would lose much of its power to consume. But I can’t – this is an EMERGENCY and must go to the top of the list. Worse, it must be done NOW.

Somehow, I come up with the energy to deal with what needs to be done – and it gets done – but there is an aftermath, a surcharge if you like, and the accomplishment is followed by a period of being awake but completely non-functional. We PWCs really can’t afford adrenaline – it takes much longer to metabolize it.

During that aftermath I often surf the web.

I’m looking for THE ANSWER. What’s the question? Who knows – who cares? Something in me wants someone else out there to tell me what to do, now, in such an authoritative way that it drags my mind out of the hole and gets it to work again.

There’s nothing there. I have a file where I record the ‘nuggets’ gleaned from surfing, the things I am absolutely grateful I have discovered. A short list (Dec. 2012-Jan 2013):

I: Standing desk, walking desk [PV + comments]          3:02 PM
I: Boomer Novels – and Boomer Cafe website [PV]       9:41 AM
I: Sworn Secret,  Amanda Jennings [Dead Guy – Lynne Patrick]
E: Friend – Have started Freedom: IT CAN WAIT        11:17 AM
I: Sharon Reamer. Good book video, cover [PV ->]    12:27 PM
I: Dropbox – saving your information         [PV?]          12:27 PM
I: Reviews [PV], bloggers charged with defamation    12:29 PM
I: Decision fatigue – and sugar!

I: means the nugget came from the internet, E: that the information was in an email. PV is thepassivevoice.com.

Looking at the list,

I can see that many hours of surfing went into relatively few really critical pieces of information – and ALL of them could have waited. Until the day’s writing was over, at least, or until the next day. In the case of late ones, I was surfing instead of going to bed, thus mortgaging the next day’s writing, for the relatively small pleasure of today’s surfing. I KNOW these things – it’s a little daunting to see that my precious nuggets are so irrelevant.

Back to the question of Why? I think it is because, like playing solitaire or sudoku or a million other games, the ability to do something that looks as if I’m using my brain – ie, being human – is required to keep me sane. And I have used up the ability to be creative, so I settle for the APPEARANCE of creative: Look – I solved another HARD sudoku puzzle! I’m ME. I’m functional!

This is data.

I don’t think I’ve put it quite this clearly before: human brains WANT to create, to ‘do something useful with their time.’ If I can’t have real, I will settle for apparent. It’s Catch 22: if I have the energy to get myself out of the loop, I’m not IN the loop. If I’m IN the loop, I don’t have the energy to get myself out.

I’m learning. I can restore SOME functionality when I can put myself down for a nap. Afterward, most of the time (depending on the surcharge), there is some restoration of functionality for that day, that time – I may even get something done.

THE ANSWER: to be normal.

It’s not on the web. It’s interesting that after 23 years I still look for it. The brain wants what it wants: to be the way it used to be.


It’s over 29 years now.

Still here, still broken, still trying to find an answer I’ll remember when the brain refuses the jumps.

I am so boring!

Why do you surf?

Gather scene plot points before writing

WARNING: FOR PLOTTERS

I have no idea how pantsers (those who write ‘by the seat of their pants’) decide what goes where in their books, or scenes, so if you’re a writer of that persuasion this post isn’t for you!

Even plotters have many variants

Some plotters are outliners: they construct a detailed outline for their novels, listing events in each scene, and, when they have a clear enough picture, follow their characters along and write down how they talk to each other as the events unfold.

There are writers who plot part of the time, as necessary, when they get stuck or when a section has to have a chronology to make sense.

And then there are people like me (I hope I’m not unique!): decisions are made in advance for every little thing that could happen in the whole story – an interaction between two characters about their Motivation; the introduction of a theme; the next step in a plot sequence that spans the whole trilogy…

I don’t know if I would have been this controlled had my brain still functioned the normal way – I didn’t write novels ‘before.’ But it helps me function when the amount of work I can keep in my head at a time is about one scene’s worth. At times, one beat – a section of a scene. My problem when I don’t do this it that the same ‘good idea’ will end up, in slightly different words, in more than one place in the novel!

So, necessity or temperament:

I call us Extreme Plotters

All this goes into the scenes in the list. Each scene has its little laundry list.

And then the improvisation can begin – everything is ready but the words.

And that little bit of ‘business’ will occur in only one place in the novel – and I know where and why.


From January 2013 (but I still use it every writing session):

Appreciations: Stuff that has to go somewhere

There are marks that a story has to hit to be considered complete.

For example, Blake Snyder, in his Save the Cat series on screenwriting, lists what he calls beats (on his ‘beat sheet’), things such as Opening Image, Theme Stated, Catalyst, and Dark Night of the Soul.

James N. Frey, in The Key: How to write damn good fiction using the power of myth, has a similar set which he calls a stepsheet that includes marks to hit such as the Call to Adventure, the Confrontation with the Evil One, or Obtaining the Prize; and a set of mythological characters to encounter such as The Armorer, The Evil One’s Sidekick, or the God with Clay Feet.

Other theorists have their own sets of points to hit for a novel or screenplay, and other structural systems such as Dramatica have their own collections of ‘pieces’ to include somehow in the finished product.

Finding a home for the pieces in the list of scenes

The last part of my Scene template is the section where all these systems have space to assign their points to particular scenes. I call these appreciations, or apps, from the original Dramatica version terminology.

Many of these systems have points in common, and are different ways of interpreting features that stories need. Odds are that people evaluating a novel or screenplay for acquisition will have their favorite system- and there is no reason why different systems can’t be accommodated within the same story and story structure.

The appreciations remind me that somewhere within THIS scene, I have elected to show, say, my protagonist preparing for the quest ahead by consulting The Wise Woman, or that this scene is the place to illustrate what Snyder calls the ‘All is Lost’ moment.

The illustration (‘encoding’) of the appreciation could be a bit of description or setting, a phone call and one or both sides of the ensuing dialogue, or a character’s thought expressing the theme for the reader. My choice – and where the writing and the artistry happen.

There are an infinite number of ways to illustrate any appreciation.

When done, a list of the appreciations showing the required points, scene by scene, could show an editor or studio exec that the story follows his favorite system* – and ‘validate’ the story’s structure. The point is that if the story needs to have a ‘consultation with a Wise Woman’ in it, I need to know which scene I’ve chosen to put that into. When I’m writing/I’ve written the scene, I can check the beat/story point/mark off my list once it is illustrated somehow. It is bookkeeping – that’s what templates are useful for.

The remaining few lines at the beginning and end of the Scene template situate that scene within its Chapter, and keep track of the action on a larger scale.

It looks like a lot of work to create and maintain this much structure. I think of it as preparation before going into battle. I know that when I reach the end, each of my scenes has done its job, and I haven’t left things out.

And it frees me up to do what I really want, which is to write the scenes: the stage is set, the actors are costumed and ready, and we get to Action!


*This is not an original idea – that you somehow include different ‘systems’ into the same book or screenplay – but I can’t remember where I ran across it. It makes sense – many systems are different ways to accommodate the same structure, and are not necessarily incompatible.

Thoughts?


 

Plot quirks as much as holes

AND HOW WOULD YOU KNOW?

‘Missing’ is an odd concept

For a visual or graphic artist, there a billions of colors – digitize the spectrum as finely as you like to get as many distinct numbers as you need.

Of course, you can’t use them all.

And at some point the human eye can no longer distinguish between the shades.

A complete scene is another odd concept

That’s where the art comes in, for each writer, in deciding how much stays, how much is irrelevant (including whether or not to use scenes at all, but that’s getting a little too experimental for me).

From January 2013 comes an answer that turned my brain topsy turvy:



Upending plots to find holes

I had an interesting experience recently which gave me ideas about finding – and solving – plot problems. In the course of playing too many games of Free Flow on DH’s new iPad mini, I solved all but a small set of the 14 x 14 levels included. It irked me that, no matter how many times I went back to the remaining small unsolved set, even starting completely from scratch, I couldn’t find the trick to the solution.

A minor problem, you say. Agreed. But games can be useful (I know – this doesn’t justify all that time spent gaming) – or humans wouldn’t have invented them, and wouldn’t get so much stroking from them, so much pleasure, that they can become addicting. There is a sense of completion that releases endorphins and other good brain chemicals when a puzzle is solved.

So, I continued to come back to this set of unfinished puzzles.

But it wasn’t until, in desperation, I turned the iPad upside down that I found my answers: even though I had started each level from scratch, the orientation of the dots (you are trying to connect each colored dot with its mate in such a way that all squares on the board have a color in them and NONE of the squares is EMPTY) had locked into my brain prematurely, and I literally could not see them in a different way.

It actually HURT my brain to turn the iPad upside down, and to view each puzzle WRONG – but in a new way.

I told myself anything that made my brain hurt must be good for it (on the theory I hold that the brain is a muscle-like object, and it must be exercised).

I deliberately tolerated the stress – and quickly solved the remaining puzzles I had been struggling with for more days than I care to admit. Immediately. The skills I had developed for this particular little game had settled too soon into working on the default orientation – a technique that got me successfully through most of the 750 puzzle levels that came with the game – but not all.

I’m doing something similar with the scenes I’m revising now:

I have text for these scenes, text that I like, and a flow through the plot that strokes my brain (we all write, first, for ourselves), but it isn’t good enough.

Revising in place, just taking the words that are there, the order of words in a scene, and making them better, is good and useful and satisfactory – after all, I worked hard to write them originally.

But it doesn’t solve all the problems. I’m stuck, in some scenes, with a feeling that I haven’t done my complete job, that there are unexplored empty ‘squares’ on the grid. A feeling that if I notice a tiny void, a reader will, too. My brain hurts.

But the reader can’t fix the problem. That’s my job. If my writing isn’t satisfying me, it has no business going out into the world.

So I’ve been taking the elements of a scene, and going back to ‘start.’ Rearranging the order, re-thinking, re-visioning.

Letting my brain hurt.

Turning the scene completely upside down, asking beginner questions: What does this scene do? Why is this scene in the book? What can the reader only learn here? Even, Why the heck did he do that?

I’m hampered by the fact that I can – as an end result of many years of reading – turn out clean copy that LOOKS finished with relative ease. And once it is fixed in black and white on the page, it is very hard to question what looks ‘published.’

It takes time. It isn’t strictly necessary.

But if I identify the plot problems – the little bugs which irk the brain – those empty squares – and solve them, I get the endorphins. And a scene I have to admit is vastly better.



The interesting part has been that I have found extremely few places where I want to go back and change something in PURGATORY – which I just finished rereading.

Apparently, once I’ve got it, it locks in, and then it’s real, and I don’t need to go back. I didn’t think it would be so.


How about you?

If you’re a writer, do you find a strong stop for each scene – or do your scenes make you want to get out the editor?

If you’re a reader, can you tell when something is finished?

Just curious.

The limitations of a writer circumvented

EXPERIENCES ARE STILL POSSIBLE

This one I picked to bring forward again because I’m glad I recorded this post about getting around some of the significant Life imposes on those with disabilities and chronic illnesses: finding ways to keep the raft of experience growing even as we chop off pieces to fund our work.

I have to find a way to make the singing a bigger part of the current life.

And it is also timely, as Easter is next Sunday.

From February 2013:


I have been coping all morning with the side effects of yesterday, not being able to write, nor even look at my notes for, the current scene under revision in the WIP.

And yet, I am not unhappy.

With the limitations of CFS, I live a tiny life: I try not to leave the house more than 2-3 times a week, I say no to almost everything, and I have worked hard to create a schedule that puts the writing first (Get up. Grab First Diet Coke. Block internet for 2 hours. Write. Take First Nap. Get up. Grab Second Coke, protein breakfast shake. Block internet for 2 hours. Write. Take Second Nap. Phew – most of day is now gone.).

My house is, understandably, a disaster area. The bills get done when I am either forced to or have a functional period after the writing. Taxes, end of year deductions, holidays, occasional trips – all interrupt the flow, and take a week to recover from – and get back on schedule from. They are necessary, so I pay the price and don’t worry about it too much. If there’s energy, I write – I don’t spend it on housekeeping.

It leaves little time for the ‘life experiences’ writers need to grow – a Hobson’s choice.

But for ten years I made space for a weekly singing lesson (even though the teacher said I should practice an hour every day – and it was a rare week when I had any energy for doing anything other than singing if I had to drive myself somewhere that week). Up to 8 times a year I go to a Folk Sing on a Friday night. And a year ago, when they were soliciting new members for the tiny choir that sings at the Princeton University chapel for the 4:30 Sunday Mass I attend when classes are in session, and knowing that they practiced before Mass (rather than having a separate choir practice night, which would have been an additional outing every week), I volunteered. With the caveat that it might not be something I could continue doing.

For those who sing, I needn’t explain the joy of learning something in four-part harmony every week, however short. For those who don’t, just know that I am treated as if it’s obvious that I CAN, and that’s enough.

After a year, which I survived, we were challenged to take turns as Cantor (it’s an erratic crew due to school and other commitments, and we were down to two or three who had cantored – yesterday all but one couldn’t come). One additional training session required – I can do this: I said yes.

Yesterday was My First Time – and, minor bobbles aside, it was glorious, and made up for the loss of Saturday (preparation), Sunday (warmup, practice, Mass!), and today, Monday (can’t seem to get it together, and it’s 4:34pm). Let me say it this way: there is nothing to compare to the experience of opening your mouth and pouring sound into a properly-designed nave and choir in a stone cathedral. It is a living thing that feeds back the sound and amplifies your voice enough to fill the whole. I prayed – went for it. The feeling is a shock, the feedback amazing. The first notes of the a capella Kyrie (which I may have been a third low for – but it doesn’t matter, as the cantor sets the note, and all the rest are relative – the organist had told me not to worry, to just go for it and with it, rather than get a note from him) – me, alone, for a few seconds, and then the rest of us joined in – was an experience that is not available for money. Nor should it be. It is only available for love – and without fear.

The same for the first verse of the meditation, followed by all of us singing what we have been singing throughout Lent.

My point? That even in a life circumscribed by circumstances beyond control, there are still times when it is necessary – and possible – to say ‘Yes!’


How do you replenish?

 

My writing rules have not changed

A white notebook with some sprigs of flowers with leaves. Text: From 2013 to 2019 the Rules I write by have NOT improved. RATS! Alicia Butcher Ehrhardt

CHRONIC HAS NOT BECOME BETTER

These are the ‘rules’ I figured out way back when I started blogging.

I have moved cross-country, published the first volume of Pride’s Children, lived, exercised, eaten – trying multiple possibilities to no useful improvement.

It’s daunting.

Pain has increased a bit, and I walk less well. I’m avoiding any more surgery on my back unless 1) forced to (by a few things which can get dramatically worse), or 2) I’ve both finished all three PC volumes AND found a surgeon I believe can actually do anything useful.

Why? Because we CFS folk are sensitive to anesthesia, subject to wild pain fluctuations with surgery, and take forever to heal.

So I went back to look at the Rules, and am listing them, unaltered, so you don’t have to go look at the Archives for 2013. I may correct an odd typo or two.

Pray for me.

Contribute a few bucks to research on Dr. David Tuller’s fundraiser (he’s our wonderful journalist with a PhD in Public Health from Berkeley, where he works and which backs him up against some of the worst slanders about his abilities and motives. Why him? Because he’s been doing this for us for two years, and knows everyone and everything because he’s already up to speed. Because his research and letters, published on the Virology Blog, have been amazing. Because the other side, the fake scientists who insist I have a psychological disease, greatly fear him (they were getting away with murder until statisticians called them on it).

Rules from April 2013 – still valid:

*** DO NOT READ THESE RULES IF YOU ARE EASILY OVERWHELMED *** I AM NOT RESPONSIBLE FOR YOUR CONSEQUENCES *** YOU HAVE BEEN WARNED *** YOUR MILEAGE WILL VARY *** DO NOT ARGUE WITH ME *** YOU DON’T HAVE TO READ THEM ***

Like physical laws, like gravity, especially, these laws are immutable.

Finding my laws – and exploiting them for MY benefit, is how I survive. Which I do, erratically.

Anything else is not only really stupid, but, like gravity, results in large crashes when I fall.

I have figured out these rules in detail only the last year or two, because I couldn’t afford to know them – and their immutability – before then.

I have the scientist’s orderly mind, and the drive to understand things that accompanies it. I would have made a decent scientist. Oh, wait – I did – for thirteen years.

I want to write. I am very grumpy when I can’t write.

1.    If I am playing video games, trolling the internet, or reading far into the night, it is not for pleasure. It is because my non-functioning mind can’t make decisions. This actually has a name: Decision Fatigue. It is part of the dreaded ‘brain fog.’

2.    The only way I can make good decisions is to be rested enough. Yes, I can tell. But only, Catch-22-like, if I ASK myself – and I’m often too non-functional at the time to remember that.

3.    The only way to reset the decision-making process, for me, for now, is to lie down.

4.    The best recovery sleep is one taken just as I’m getting tired – OR COLD. It is at least 35 minutes long (the extra five is to settle down). It takes three positions: 1/3 lying on my back, 1/3 on each side. It must be: as dark as I can manage the room; horizontal; warm enough (lowering body temperature is an indicator); completely dark (use eye mask if necessary); completely silent (use ear plugs, and if the neighbor is using his industrial leaf-blower – way too often – I must add to the earplugs industrial ear protection: the earplugs alone are not enough). There can, obviously, be nothing else going on, no TV, audiobook, music. Certainly I can’t talk to you on the phone and count it as a Rest.

5.    During the nap I actively try to do all my rest-and-meditation tricks (true meditation is beyond me, but I sometimes do a little praying as I settle down, especially if anxiety is a problem (it often is)): I do three yoga ‘surrender breaths’ at least in each position, more if necessary, in sets of three. Each of these breaths has me filling my lungs to the utmost, holding a moment, and then ‘letting the breath fall out’ by opening my mouth and just releasing all tension. I – not necessarily yoga practitioners – then use all my muscles to push every bit of bad air from my body. I think this compensates for somewhat shallow breathing the rest of the time – junk in the air in the lower alveoli? – but what do I know?

6.    If I am tense or twitchy, I use those first five minutes to do all kinds of stretches – some I’ve invented myself – all lying down (unless I have a touch of sciatica – I’ll discuss that separately).

7.    It doesn’t matter if I had a nap 40 minutes ago (this part I hate). If I need another one, I need another one. Typical days without too much stress get by on two, are better with three. If I am recovering from a bad night, it can take four or five. If recovering from overdoing it (described below), pushing my limits, hitting the wall, losing it – whatever – this process WILL go on for days – regularly as many days as I overdid it; if I am VERY observant, I may be partially functional sooner – but can easily lose it again if I assume I’m back to ‘normal’ too soon.

8.    My ‘normal’ is not what ‘regular people’ call normal. You’ll see. My normal means I can get through a day with only two or three required half-hour rests – and actually get something done. (Getting something done will be described later.)

9.    I cannot work through or power through my little ‘problem.’ It would be like driving a car without gasoline, or better still, without a required oil change that is long overdue.

10.    I can choose to try to bend, break, or stretch these rules. Another one of my little ‘bad decisions.’

11. I cannot evade the consequences of having done so.

12. I am consciously trying to find the implementation that allows me to make the best choices, aware that life is imperfect, and the best choices are often not available to me.

13. Stress – of any kind – loses functionality. The loss is directly proportional to the stress, but exponential, not linear.

14. My personal limit seems to be to leave the house no more than three times a week for a fully functional existence. It is very limiting, and it is a difficult limit to enforce. I often have to make an exception to not miss my yoga class; I always pay for the exception.

15. If I leave the house, on one of those trips I may stop and do a short shopping stop: more than 15 minutes, and/or without the walker, and we are done – I must leave.

16. I can’t eat sugar or refined carbohydrates very often; if I do so, it will take four days – no exceptions – to get them out of my system. Every couple of days I may choose to do the Drs. Heller’s method of eating ONE balanced meal a day with some carbs and staying within a strict limit of ONE hour from start to finish. If I do this only a couple of times/week, exactly as they describe, I minimize its effects. Minimize, not evade – but c’mon guys, sometimes you gotta have birthday cake.

17. If necessary, I carry Atkins bars, and can have up to a couple a day. These are for true emergencies – and are sometimes what keeps me from going off the deep end, the illusion of a candybar, some chocolate and peanut. They are good for a meal-on-the-run, but if I’m on one of those, we are already compromised, and I know it. Sometimes they are the only thing that gets me home safely when I have to drive. I WILL pay for it.

18. The BEST solution to leaving the house is to get into bed the minute I get back. I’m very bad at it, because by that point I’m living on fumes, and I make very bad decisions on fumes.

19. No matter how many times I beat myself up about it, no matter how many times I fail to do the right things, I don’t seem to be able to do this perfectly.

20. I’ve been collecting some of the above data for the entire 23 years I’ve been sick. Some of it ‘clicked’ but recently – I have a bit more time to observe myself right now.

21. If I can’t get to sleep at night, I can take 1/4 of a 3mg. Melatonin tablet (which, taken as I’m getting sleepy, works best). I can also take 1/4-1/3 of a muscle relaxant (Skelaxin), which helps when all my yoga stretching doesn’t quite get the twitches of RLS (Restless Leg Syndrome) out. I WILL PAY for these the next morning with between 1/4 and 1/2 day of additional grogginess. Most of the time these methods will get me to sleep – but the cost in functionality the next day is significant. Less doesn’t work. Taken too late (I told you I’m making these decisions from the very bottom of the decision quality scale), they don’t work.

22. It takes me 2-3 days to get back on a normal schedule if I stay up too late, longer, proportionately, if I do it for more than one day in a row. Most of the time I make an actual bad choice (I COULD set an alarm, or block the internet, or turn the computer off, or put the book or the ereader game down); sometimes something occurs late at night, usually by phone, occasionally because I HAVE to finish something. The REAL RULE is: go to bed. At the same time. As I get sleepy. Like a two-year-old.

23. When I get into the lowest energy state (zombie-like but still technically awake), and caught by something that gives my mind the appearance of intelligent occupation (pick your computer game of choice, or web-surf desperately for content), I’m amazed I can even make the decision to go to bed – after hours (literally) of being stuck in la-la land. I ALWAYS beat myself up when I do this. It never seems to help.

24. I get into the lowest energy state, because, goddammit, I’m a grownup, grownups don’t take naps like two-year-olds, and I hate taking naps (you see the lack of functional decision-making here, right?), and I’ve allowed myself (sometimes by design) to get to that state by going along as if I WERE normal, and not planning when the next nap needs to be, and how many I need to take to get through the day.

25. Here’s the new rule I just figured out: WRITING helps. And having it in an easily-accessible SCRIVENER file, where I can get to it before I do the next thing, helps even more. I’ve known these rules for year, have most of them written in the more than twenty notebooks that have journal pieces, my journey as I go through life, my writing notes as I work through revisions… BUT it hasn’t been until I’ve started using Scrivener – because of its ability to have so many files for a project and not take forever to open – that I’ve started adding a section to each project where I keep track of this stuff. Now, every time I realize I’m writing the same things, and nothing is new, I’m starting to use that as an indication that I’m ready to work.

26. Writing seems to help focus my mind – that’s why I do it. But I’ve written the same words many times before – in various chunks. Slowly. By hand – which is often a good things to do (I write most of my new text longhand, and revise on clean printouts much better than on a computer screen) is TOO SLOW to capture the torrent of thoughts which flow through my head.

27. Writing LISTS seems to help focus, as well. Brain says, “We’re doing a list,” and puts stuff out in some kind of order.

28. Getting things out of my head, and onto paper where I can see them, counteracts the ability to hold only one thing in my mind at a time (see post about likening my brain to an old-fashioned computer with a single processor: I DO NOT MULTITASK well.

29. Too many things in the queue leads to total paralysis – I can’t do what needs doing for one task before another forcibly takes over the single neuron I use for thinking (the other is used for breathing, thank-you-very-much, and should not be co-opted frequently: that least to hypoxia? anoxia? death? And it usually forgets to switch back). Putting the queue on paper is the trick – I’d discovered that when capturing the To Do list manually – but only the computer list allows for editing the list easily, putting things into the right order as I edit, and modifying lists items as I go. By hand that requires re-writing the list – and gets to be all-encompassing of the time, so much that list-making becomes the sole activity.

30. I dumped this out, non-stop, in a half-hour. Feels good. Now I have to eat something – and go finish taxes. I can work for maybe another hour before Second Nap. First nap was almost two hours because I went to sleep at 5am. I am coasting, feeling almost human, but it won’t last – another one of the rules: feeling good, functional, almost normal, DOES NOT LAST.

Changes since 2013:

Very few.

I don’t do organized yoga since I’m no longer vertically stable enough to stand, and half the yoga I was doing was done standing.

I am no longer in charge of taxes – I did them until hubby retired; then he took them over. Probably a good idea.

And it’s now TWENTY-NINE PLUS years.

I’m still trying. Daily.

Book 2 – NETHERWORLD – is coming along. Very slowly.


There’s an incorrect word up there somewhere, but I’m too tired to find it again. Lemme know if you do, and I’ll fix it.

 

Symbols, the grace of rest, and pushing limits

White ceramic bunny with a bow and some easter eggs. Text: Oldies but goodies, Alicia Butcher Ehrhardt

TIS THE SEASON FOR SYMBOLS

This post is from April, 2013.

We’re in Lent, the pre-Easter season, again.

The post took me back sharply to Princeton, and the Princeton U. chapel, and being able, with a great effort, to sing in Latin for Holy Week.

A few things changed: back then I could still stand for part of the services, and some of the singing. By the time I left last year, I could not find the energy to participate in all the holy week services, I was allowed to park ON campus at the end of the handicapped ramp at the back of the chapel, and I had published Pride’s Children: PURGATORY.

Then I knew there was a possibility we would be moving, and every last chance to sing there (terrific acoustics, great tiny Catholic choir, gorgeous chapel) was precious – though we didn’t actually move until 2018 (at the end of the summer, right before classes and singing started up again after the break).

It is bittersweet – I miss it, it doesn’t miss me.

I am no better now, and six more years of my life have not been saved by medical research figuring out what’s wrong with us people with ME/CFS and fixing it.

But I’m glad I posted this back then, and I read it again and was transported instantly to the proud vaulted cathedral of stone. And the music.

Can you remember grace, and the symbol thereof, in a time in your life?

Remembering an old and dear friend

Light bulbs in a line, with the one at the right end lifted, ready to be dropped. Test: Oldies but goodies, Alicia Butcher Ehrhardt

WE HONOR THOSE WE REMEMBER

As I was going through old posts you may not have seen, I came across something with current applications, as well as remembering that day in Princeton when we put our friend (mine from our CFS support group and the Princeton Folk Music Society) Dr. Paul Whiter’s ashes into the memorial garden at the Episcopal church:

I was reminded of the fourth vow some Christian monks take in addition to their other vows of poverty, chastity, and obedience, the vow of stability, of staying in one place for the remainder of their lives. Thomas Merton wrote that it meant giving up the hope of finding somewhere else more perfect, and settling in, for life, to the ordinariness of the chosen place.

As fascinating, intelligent man, he would have enjoyed the community we have joined.

He touched many lives, with a gentle spirit.

From April, 2013, when we had just lost him: Words are my memories.

Photo of Dr. Paul Whiter

Where do liebjabberings visitors come from?

Visitors Feb. 18, 2019, to my blog liebjabberings came from US, Canada, India, South Africa. Australia, Malaysia, France, UK, and the Philippines (graphic shows country flags from my stats page) New countries to blog 2:19:19

Mar 3 new countries

SOME DAY THIS WILL MAKE A DIFFERENCE

And meanwhile, visitors are welcome from anywhere!

Stop and say hello – comments welcome. I’m going to steal the following from a fellow blogger: I like to have the last word, so you’ll always get an answer. If you don’t, know that I still read your comment – and decided to let you have the last word on the subject (at the end of an exchange, usually).

Things are getting a little less crazy around here.

We went to visit our kids in Boulder, Colorado, and had a lovely long weekend.

Then we came home, and I had an old friend visit for two evenings – she arranged her life to be able to visit, and it was so good to see her again. We go back 50 years+!

And then came the visit to the new, nice dentist – except that he had an emergency, and the total time dedicated to an appointment which was literally across the road came to over four hours – and I get wiped out by long out-of-the-house events.

I don’t care – all these were desirable (I love dentists who don’t find anything needing doing, even when a bit of a porcelain crown cover came off) – and much appreciated visits with loved ones.

I’m getting to the new stuff.

One of the residents here, of the several who have read Pride’s Children: PURGATORY, chatted with me this afternoon about her reactions to it – and has offered to connect me to her book club. Book clubs are wonderful ways to get word of mouth out to serious readers, and I look forward to maybe even visiting some of the many in our new city.

I get so few opportunities to just talk and answer questions about my writing (one tries not to be a pushy author) that it was a real pleasure, as well as good for the soul. She got so many things about the work.

One of my main questions – because it’s a trilogy – is always whether readers were unsatisfied at the end of what is known to be the first volume, and feel cheated in any way. She said no – but she can’t wait for the next one – which is balm to my senses.

She also said she had trouble putting it down, and for someone whose nightly habit is to read a bit with her doggie settled in her lap, and then go to bed, I find it cheering to be unputdownable.

I ordered and received a proof copy from Amazon. Createspace has closed, and the automatic transfer to being printed on demand by KDP (?) has to be checked out. The cover looks fine (except that it says ‘proof’ on it, right through the middle of Kary’s head), but I need to compare the paging, and look for the few errors that have been corrected, and make sure they are using the latest file. Due diligence. Then I’ll see about ordering some replacement copies to have as my pre-move supply has all been given out at our new community.

And the usual small problems.

My .mobi electronic ARC has NOT worked for the last two people I sent it to, which means Kindle changed something, and I need to re-create the file to send out for reviewers. There are few things worse than getting someone to read and review for you, and to send them a file they can’t open!

It is irritating to have to spend energy on something that was working fine. And it means going a long way back, and worrying about the version of Scrivener (I have v3, and haven’t updated to it yet), and figuring out a bunch of things such as Compile for ebooks…

I just found my writing books – I used to have them at my right hand while writing, but haven’t since everything was packed and shipped: what have I missed and will it show in the new scenes?

I still haven’t recovered from last July’s crash.

I can’t remember where I was on so many little details of life. And writing.

But this is the last move

before I finish the trilogy – if I have anything to say about it. And the good Lord gives me life and brain.

Things can only get better – I’m excited at the possibilities, and cheered by finding readers here.

I will get my software, computer, and backups under control. I’ll keep writing, and make the progress I had hoped for from the new digs.

And go swimming.

It was always about the pools.


Does your future have pools?


 

Keeping books alive while finishing writing

A baby coffee plant in a paper coffee cup, with three red coffee berries

Baby is a coffee plant; it’s finally unfurling

BABY IS A METAPHOR

And a real live coffee plant.

Yes, those are three other coffee beans.

We moved Feb. 5, and soon after that, one of the other residents dropped this off outside our door, based on a discussion he and my husband had about growing a coffee plant both as greenery and for the purpose of some day processing the beans – and making a cup of coffee from scratch.

The photos I posted before were of the barely emerged cotyledons (the first pair of leaves from a seed).

Water – specifically too much watering – is a problem for seedlings, and I was determined not to kill off the first living thing someone had given us a present in our new community.

But I was in no real condition to take care of a plant, and we were all winging it.

Becoming a plant midwife by necessity

The thing just sat there on the windowsill for days.

Mindful of the over-watering bit, I scrambled to put just a drop or two of water on the hard outer seed coating keeping the leaves enchained. Several times a day, I would paint the surface with a drop of water, hoping to hydrate the membrane so the plant could push the leaves out.

The giver had said something about helping the leaves emerge, and after days of the water-painting big, I finally decided to try something more proactive. I was convinced I’d already killed the thing anyway.

This is all happening after a move

The final move. To our apartment, the one that has two bedrooms and baths, and had taken three months to customize for us.

More disruptive than I could have known, the move took the few things I had managed to fish out of boxes for the temporary apartment (and five months is a long time to essentially live out of a suitcase) – and threw them in boxes to be transported up one floor, and over three units.

I lost everything all over again.

And I have not been so exhausted in a long time. I still am. ME/CFS doesn’t give you more energy because the stress level increases; the opposite is true.

Because, as everyone else knows, when you change apartments every single item has to be moved from one to the other. It isn’t a gentle thing.

The movers were great (and put our bed with the light bridge finally back together with all the pieces – it had been separated last May!), but the results were still as if a bulldozer had been used.

How is this relevant?

I couldn’t find anything to work with!

This is a tiny plant an inch or so tall, with twin stems, and I knew I could break the seed heads off with one careless or clumsy move.

Exhaustion isn’t helpful when doing fine work.

Finally, after a search through the Amazon boxes (because those contained the more recent stuff, as having been packed after the long move; the things from the original packing were in Home Depot boxes), I found my emergency sewing kit, and the perfect tool: a dressmaker’s pin with a  spherical plastic head to grip and a very fine point.

Midwifery successful

With the pin, and shaking fingers, I slashed at the confining cover little by little until I could fold away most of the hard casing, and over the next two days a wrinkled green thing emerged from each seedhead. At the beginning, it looked like the surface of a tiny brain.

Then the hydraulic pressure unfurled them a bit, and I was surprised to see two leaves separate from each.

Coffee seedlin after opening to two tiny leaves per stem

They are very shiny. You may be able to see that the liberating process left a few tiny holes in the leaves. My bad, but it’s free!

Also, you can see that the other three coffee beans are starting to rot (the one in the foreground has turned almost black), which is how these get started.

Of course, this means they will need their own coffee cups one of these days.

This is a metaphor for the way things are going

Because more and more people here have read PC, and all my print copies are out being read, and one person even insisted on buying the copy from me.

I have had to order a proof copy in the new system, as these are no longer being printed by Createspace.

If it’s basically identical, and uses the correct pdf files for cover and interior (I have heard horror stories), then I’ll have to get a few more author copies to have around.

None of this is marketing

My bugaboo.

As soon as the current situation improves (I actually finally started last night with something easy, and unpacked a couple of boxes today), in two or three hundred years at the present rate, I will plunge into both finishing Book 2 and marketing Book 1.

But meanwhile, I continue to find new readers one at a time, here and online, and some encouraging comments.

I’m sure the frazzled mental state is temporary.

I hope Baby makes it, too.

Do you have stories of forcing something to stay with us?


 

Knit up the ravelled sleave of writers’ cares

Photo of a loaded canoe heading toward the end of a lake or river. Text: The rapids are coming, the adventure continues, Alicia Butcher Ehrhardt

FINDING THE PERESTERO

I was just napping.

Sleep that knits up the ravell’d sleave of care

Shakespeare, Macbeth, Act III, Scene 2

where, apparently, sleave is correct, because:

Macbeth wasn’t talking about the arm of a garment; it wouldn’t really make sense. He was talking about a tangled skein, of silk or other material, which makes perfect sense. And for that, the spelling — which the original author used, correctly – is “sleave.”

Says https://www.phrases.org.uk/bulletin_board/5/messages/517.html

The Thesaurus on my copy of Scrivener provides:

unravel verb

1 he unraveled the strands: untangle, disentangle, separate out, unwind, untwist, unsnarl, unthread. ANTONYMS entangle.

2 detectives are trying to unravel the mystery: solve, resolve, clear up, puzzle out, unscramble, get to the bottom of, explain, clarify, make head(s) or tail(s) of; figure out, dope out. ANTONYMS complicate.

3 society is starting to unravel: fall apart, fail, collapse, go wrong, deteriorate, go downhill, fray. ANTONYMS succeed.

pick your favorite for my life right now.

I don’t want you all to think I’ve gone dark.

I’m really just OVERWHELMED (I’ve talked about the two reasons Alan Lakein gives in his book How to get control of your time and your life for procrastinating on tasks; the other is UNPLEASANT). Overwhelmed is better; it yields to lists, and small tasks getting started and a whole slew of other relatively easy tasks; Unpleasant tasks need severe shock tactics some times.

Part of that reason (for being behind on blogging) is that whenever there is the smallest chance that I won’t be interrupted after I corral my brain and get it ready to work, I go to the next step in the next scene in Pride’s Children: NETHERWORLD, which is slowly coming along (I’m in India right now!), because that is always my first priority, and the reason I initiated this whole move-to-California in the first place.

I just woke up from the weirdest – but most logical – dream

In my dream, we (which turned out to be my husband and I, not my parents and I) were redoing the flooring in the house in Lindavista, Mexico City (I haven’t lived there since 1969, and was married out of that house in 1975, after which my parents sold it and moved to the country club, a house I only got to visit, not live in).

We are, however, using the blue tile that we’re using for our final (until we need Assisted Living) apartment here at the retirement community in Davis, but possibly only the same color dark blue tile, and the one we’re putting into Lindavista’s kitchen and dining room is linoleum, not ceramic – but linoleum dark blue tile was what we had in the house we occupied in Hamilton, NJ, not in Mexico.

In other words, the brain is trying to make sense of all this upheaval in living places.

To make it weirder, after I find Bill, and tell him that the tile man wants to know where the perestero is, I go off to the back of the house somewhere, and am using the little tea table that here sits between our TV-watching chairs, because it is the perfect place and size for me doing handstands (I keep trying and adjusting my position, each time getting a little higher) – and it feels so good.

This is all at the tail end (tale end?) of a dream

which was part of a 45 minute nap (on the timer), but stretched to 1.5 hours. Because I am so tired.

Yesterday, I literally fought with my brain, sitting in the dining lounge (because that was the only place I could find a clear table) with everything I needed to make scaled floor plan of the place we’re moving to (the longed-for two-bedroom, two-bath) to go with the scale cutouts of all the furniture we brought with us, so that I can tell the movers where everything goes. The brain gave me no help at all.

Because, after more than 1.5 months of accepting the offer of the 2-BR, 2-BA, and me thinking they could never get it finished at this rate before the end of February, so it would be okay to go visit our son in Colorado early in Feb., they suddenly got a move on (haha), and gave us a date of Feb. first.

Which is a Friday. They said we probably shouldn’t move on a Friday, as then the maintenance people here would not be available over the weekend to do such things as hook up the internet and washer/dryer (no, not to each other, but maybe? I hadn’t thought about the possibility until I just typed it).

During the nap, I have told myself to listen for either the phone or the iPhone because I’m waiting for the call back from the movers.

So back to the perestero:

I told the tile guy in that Mexico part of the dream that my dad had let me help lay tile with the blue stuff, though I know that the only time I may have ‘helped’ Daddy lay tile was when we were living in Whittier, and I was five, and I was fascinated how the little tile hexagons were attached on the back by a mesh, and how he was soaking them in a bucket to get the paper backing off. That would have been around 1955. He was, I believe, tiling the shower in the second bathroom of that little house (yup, two bedrooms).

By the way, even though ‘perestero’ sounds like Spanish, and you should pronounce it that way (because that’s the way it was in the dream), it is no Spanish word I ever heard, so I haven’t the faintest idea where it came from. Maybe my sisters will know, if they  read this!

And back to the move

(and here you thought I never would!)

The mover guy comes on Monday at 2pm, January twenty-eighth, to discuss a move I’m hoping will happen Feb. 5,6, or 7 – less than a week later.

We have rescheduled middle child for the last weekend of February, whether we’re unpacked at ALL by then, because that’s the whole point of the CCRC (Continuing Care Retirement Community) concept – you can walk away whenever you like without worrying about plants, house, yard, mail – anything – without coming home to a disaster.

Assuming we can find enough underwear for a weekend, and some of our cold-weather clothes – I’ve been wearing the same pair of sandals almost every day since Aug. 28th, 2018 – as Colorado may have cold and snow. Or may not.

The only thing that will hold up that visit is the government shutdown, and I refuse to tackle that right now (or ever; it’s above my pay grade).

My apologies for the dark blog

Although I must confess that the main reason you’re getting this is that the dream required recording, and I thought it might entertain my patient and reliable readers.

And whoever is reading a copy of PURGATORY in KU: could you please finish? You started Jan. 28th, and I’m on tenterhooks, because right now, you’re the only person I know for sure is reading it. And a review would be lovely if, rather than abandoning it, you are merely taking your time (there was an initial burst of pages over four days, then a gap, and then another burst, and then nothing for a couple of days…).

I would really like to think that, after I get back to writing, there are lovely somebodies waiting for the results.

And how are you?


Being a quirky writer for yourself

A wolf baying at the night. Text: Some of us writers please ourselves. Alicia Butcher Ehrhardt

I WILL BE A QUIRKY WRITER

Especially because I may write few books in a lifetime, where the fiction push started late, and already ill when I began writing, I have to make the books count.

There will be a shelf next to my bed in the last place I live, and the books there will have to be what I wrote – and what I love.

But it’s quirky in an odd way. Either a reader will like what I write, or not be of my tribe.

That’s not so unusual: all writers have a tribe, once they’re past a certain minimum of quality that they can stand to put their name on nom de plume on.

Or they wouldn’t keep writing.

I write in blood

But I will never write to market. Never mind that I can’t – writing to market takes a lot of energy. I don’t want to.

Now that I’ve moved, I never have to write again. There are a million things even I can do in the new place, and they all take energy, and they are all a lot more fun than writing.

And then one person comes up to me at dinner, and tells me how much she loved the TV talk show scene, and I’m hooked again, on the dopamine that comes only to writers who have done their best, and have been rewarded, and have no internal regrets about skimping.

I honestly don’t want to go back and change a single word in PURGATORY. Which is good, because it would be an incredible amount of work.

But it’s also making me insecure about picking up the metaphorical pen again, because I haven’t been able to finish the one scene I’ve been working on since before we moved.

So much is riding on this scene

Plot, characters, theme – everything is going through a knot.

Everything is getting kicked up several notches.

Because the middle book in a trilogy needs that.

And I had no idea it was this one place I would have foundered for a while, no matter where I had been, until I started writing and realized how many threads I held in my hands, how many things go from before – toward the end of this book, and the end of this story, and how critical it is to get it right.

I think my subconscious knew, and my brain protected me.

So I would have time to consider what I’ve set out, fully.

I can’t wait to get to these ends, but the path has to be lit and leveled and have the right slope and the best edging and a solid underpinning of rock.

Because it leads toward high cliffs, and I would rather my characters (whom I’m very fond of) found resolution almost any other way. But there is none.

Glad I got that off my chest

And may your New Year have that kind of pull on you.

Once you get over being afraid of heights, the view can be amazing.

Over to you: what’s in store in 2019 that you can’t wait for?

 

Christmas Present: a change of focus

A mug with the legend 'The Adventure Begins' over the image of a canooist. Text: A new life begins now, Alicia Butcher Ehrhardt

KEEPING PROMISES TO MYSELF

I have been holding my breath for a very long time.

Worse than that (but necessary), I have been saving my physical and mental energy for well over six months now, not having enough to write because there was so much to do with moving, selling the house, getting used to a new place (temp.), and now, making the arrangements for the permanent new place.

I had gotten into hoarding mode: don’t spend the resources unless you absolutely must, because you cannot get more, and there are so many things which must be done.

Occasionally, I got a few days in where I was writing, or trying to, and the current scene would get a few more details or another bit of motivation or an insight, but the dark would sweep in again (okay, I’m exaggerating, but things became pressing, and I knew the whole process was depending on us doing something or making a decision on something, and it would take even longer to get over all the drama if we didn’t) and halt all progress on Book 2.

It seemed selfish to even attempt to write

because there are so many burdens on my husband I can’t help with, and there were a few things I could do for us.

I succeeded in NOT crashing, something that happens to us ME/CFS types when we overdo it, over such a long period I thought it would be forever.

And in keeping up some semblance of a cooperative household.

But the last couple of days I’ve realized that intense period is over.

And I have slipped into a waiting mode, a hoarding mode as I said, that is no longer strictly necessary.

There will be supervision.

And we do (he does) have to finalize the choice of ceiling fans.

And I need to remind Facilities that carpeting has a nap, and that seams need to go where they won’t be seen (I’ll write that email today so they have it whenever Christmas is past and someone decides to install the carpet).

Even PT is technically over

Long story. Some progress. But I am now on my own, with a set of exercises, and a sequence leading to the hardest in the set, all laid out on paper, with the timing up to me.

I have to be careful – that’s where some of that energy had to be spent – because the pattern is now ‘day of exercise, followed by two days of hugely increased pain,’ repeat ad infinitum. And dealing with that level of pain is exhausting.

But we were all pleased at how quickly I progressed, even with minimum repetitions, and I can get another referral for more PT when I feel I’ve mastered this bunch.

I am now officially hard-abbed and hard-assed (yay, isometrics and work against a resistance band), to a degree not acquired before.

It really helped to insist on being taught correct form until I got it – the difference is quite amazing for some of the exercises. We didn’t actually do physical therapy at the PT sessions: I used them to demonstrate progress, and get trained, and find out what next, in writing and pictures.

Which helped a lot when the first temp PT person, who was very good, left, and I met who she had told me was the permanent person here, only to find out that he is just as temporary! He’ll be here a while, and may still be when I decide on another bout, but I made sure he did an evaluation to document where I am now (I didn’t want to waste my last session with her on it), and there is a nice bit of progress.

Nothing earth-shattering – I still can’t walk without the walker – but a huge change in strength in appropriate muscle groups, and distinct progress.

So now all I have to do is keep doing it, pushing toward the exercises I can’t do well yet, and keeping everything core rock hard when moving something else…

And the question pops right up: are we writing?

Because, given a life of luxury and doing things to entertain myself, I would rather be writing, if only I can have my brain on board, please.

There will be a long (could be several months, might be just one) period between these last home choices and move-in day, but I can’t afford (writing-wise and mood-wise) to stay on hyper alert for being needed to do something at short notice, so much so that I have to save every drop of energy.

And I’m having some talks with myself about how to shake myself out of wait/interruption/hoard energy mode.

I need to create a semblance of a ‘new normal’ for myself

The old one is no longer available, whatever it was, and it didn’t allow for all the new opportunities I have now for exercising/moving/not just sitting.

The social opportunities need to be sorted out – we have a large number of lovely new acquaintances, but turning a few of those into new friends is just starting.

I love going to dinner and meeting new people – and wonder why I’m left as limp as the proverbial dishrag when it’s over. And the answer is that being coherent for an hour, and coping with a flow of new input, is very difficult for me. We have to eat. We can have dinner just us two at a small table. And no one will judge us. Except I do, sometimes, for having missed an opportunity!

I have a tendency to retreat into sudoku and other such entertainments which can be stopped at any time (ie, the unplanned interruptions).

I have a tendency to push myself to stay awake until the need for a nap is so overwhelming that it can’t really do its job of clearing out the debris of thinking.

I have a tendency not to plan when I know there isn’t a prayer of being able to follow the plan.

But my Christmas present to myself is to realize there is a new present

to be determined, and figured out, and planned.

I have paid most of the price for a new life. I am exceedingly grateful to have it.

Now I have to figure out how to open that present and live the new life, not just survive it.

And to remember that the next move, however horrible, will be to the promised land (yes, I still have to turn our new balcony into a bit of a garden because all I’ll be able to see most of the time is the flagpole).

Not so much New Year’s resolutions as waking up to the new world.

And getting Book 2 finished, etc., etc., while still getting into the pool as often as possible, and using the adult trike, and getting up my courage to buy and use an Airwheel S8 (my long-term plan for mobility). And learning to use CBD oil to manage some of the extra pain. And doing some trips out of here for something other than picking carpeting and going to church.

New life, new choices.

Present, not past or future.

I HOPE each of you is getting a present, too. I’d love to hear about it.


Christmas blessings to all who believe in Peace on Earth to humans of good will. There are still a majority, I am convinced. Don’t know why, except that I seem to be the eternal optimist. In spite of everything.


PS Not much feedback yet, but several people here have already read PC. And it would be amazing to be invited to participate in one of the many book clubs they belong to.


 

Marching off to the carpet store

Apartment layout with colored sections to indicate rug and tile colors

Grownups with crayons

NECESSARY STEPS ON THE CRITICAL PATH

I figured I’d update my faithful followers and occasional readers on WHY there is not more progress toward Book 2 in the Pride’s Children trilogy.

And reassure you – there has been some progress, which I will write about when the current scene is actually written, because I discovered a new technique (for me), and it dislodged the logjam.

But I’m not actually writing yet because…

I have to focus now on getting out of this temporary place as soon as possible.

Which in practical terms has meant such things as borrowing a box of crayons from Facilities (who got it from the ‘healthcare activity department’) – to decide which colors go where.

Above is the winner.

You’d think they’d have visualization tools in a place where apartments are being renovated for each new set of residents, some nice piece of software with all the floor plans already included, and a quick way to try your choices even for the non-computer-savvy crowd.

But no.

Turnover is significant in a community this large

I hadn’t really thought about what it means to be 96% occupied, but one thing we found was that certain apartments – if you have a preference – may not come up for reoccupation as often as you might need, so there are waiting lists.

Also, a community of this size (and with permanent residents) may have a large number of units turn over every year (around 20, for a rough estimate), and that each of these gets renovated to the taste of the new occupant.

In an ordinary apartment complex, many things are standardized, and the tenants don’t decide what the floor coverings will be, and often have no choice of colors. Management makes changes mostly on its own schedule.

In a different community, one of ownership – houses or condominiums – individual owners arrange for – and pay for – their own choices with individual contractors.

But in a CCRC, management makes the changes according to the new residents‘ wishes. Too many cooks. Many of those ‘cooks’ also think of the apartment they don’t own as if it were their own new house. Many are willing to pay for significant upgrades – because they’re used to having their own way. Which process may also delay the completion of the new units, so the residents can’t move in!

We’re going for the simpler version

Let management do most of what they want – it seems good enough, and we’re easy.

Ha!

But easy or not, we still have to sign off on everything, and it turns out their desire to standardize more from here on (and speed up the turnover of units) is getting a bit of pushback from us because ours is the first apartment of our floorplan in the new system, and we think there’s room for improvement. So we make very logical explanations of why something is better.

And they, wanting new people to be happy, have listened.

So the battle is to make the decisions as quickly as possible – but with foresight and questions and details and…

Meanwhile, we’re occupying two units.

And I desperately want to get back to my writing, especially now that I’ve figured out a path through the maze, but I can’t, in due conscience, live with a faucet which is installed so far back on the bathroom countertop that you can’t move the lever which closes the sink. Or a host of other minor atrocities.

So we move each day a little closer

And I try to have a little more patience, and move things along, but still not end up with a light fixture in the bathroom with naked compact fluorescent bulbs!

So, for your delectation – and in appreciation of your patience and because I haven’t blogged in too long – I give you my crayon drawings.

The colors are the ones we both still like – and will remind us of the home we sold (and which doesn’t probably look anything like that any more).

We don’t like white. Not for floors. They always look dirty, always show up pieces of stuff, always need vacuuming, and require instant action if you spill something so it doesn’t stain permanently. Newer carpeting is better, but I’m still not impressed. White is loved by designers because it artificially makes places look bigger. ‘Artificially’ is the key word.

And you have to watch these people very carefully: so far, every time we’ve had a layout presented to us which solved a problem, and which we now approve of – they have snuck something else in which wasn’t a problem before – and now is. I’m sure that’s a finite problem, and we will eventually lock it in – but we have to watch each new printout for the removal of things we thought we’d already agreed on!

Authority and responsibility should go together, in principle

But this process doesn’t work that way, because there are three parties involved. We’ll be living in the new apartment for the rest of our lifetime’s ability to live independently (a sobering thought), but we’re not paying for most of the renovations – except through the buy-in, but that’s not a direct payment to the contractor.

We have not been given a budget (they like to keep that under their hat), except that they’ve finally given us a number to aim for in the carpeting cost (we’re off to use that information today).

We don’t know exactly what the budget is for appliances – but the facility likes to keep them in certain families because they have spare parts which makes maintenance easier for them (except that they had given us the option of a refrigerator with a water dispenser, which we enthusiastically accepted, and then rescinded it).

I drink a lot of water. I’ve been filling water bottles and putting them in the fridge. Back in NJ I didn’t take the trouble to have the icemaker fixed, and so spent a lot of time filling ice cube trays, and don’t want to be doing either for the rest of my life, especially as I get older and feebler…

And so it boring goes

It should be over soon.

Except then for making sure they do what we thought we agreed to have them do.

Before correcting mistakes gets too costly.

Pray for me, sympathize, and this may happen to you, too, some day – so learn what you can.

And I’ll be back to blogging about something less mundane asap.

Happy to hear your stories of remodeling, especially if I can learn something useful for us now.


Meanwhile, check the upper right hand column of this blog if you have Christmas presents to select for literate grownup readers.