Category Archives: This writer’s life

Boosting Jennie Spotila’s post on dancing

Little girl in bikini dancing on beach. Text: Dance. It's good for you. Alicia Butcher Ehrhardt

TODAY IS ME AWARENESS DAY

Jennie uses her inability to dance as a metaphor – the entire post (and her blog in general) is always worth reading.

This excerpt chilled me, because we’ve been TOLD, by the NIH (National Institutes for Health) and its director who has been ignoring us for decades, Dr. Francis Collins, that we’ve getting DOUBLE the research money this year that we had last year:

If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.

ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.

NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.

DOUBLE OF NOTHING IS NOTHING. Remember that – it’s an old joke.

Please read her whole, excellent post.

Dancing is a human right

No one should stop you from moving except yourself (and we all had that desire to move as small children, so ask where it went, if it’s gone).

Moving freely in your body, with energy, is a human right (and we’d be attached to rocks if we didn’t have it). Except I can’t any more, and haven’t had that energy in a long time.

I gave my remaining love of dance to my character, Kary, in Pride’s Children, because I know what it is to dance for a short while in my kitchen – something I lost years ago to both the ME/CFS and my back problems – and miss daily.

The end of Chapter 16 in Pride’s Children: PURGATORY (Andrew comes back unexpectedly to pick up a script):

Dance excerpt 1, PC1, Chapter 16

Dance excerpt 2, PC1, Chapter 16

I kind of like this one.

I REALLY miss dancing.

Shall we dance?


Remember, my royalties for May go to the fight against ignorance and lack of research.


Thanks again to Stencil, for giving me the free image (the words are mine) of a little girl dancing on the beach. It was perfect.

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May 12 – ME/CFS Awareness Day – again

Picture of dog with its tongue out. Text: No treats for me. ME/CFS has stolen all my energy. Alicia Butcher Ehrhardt

AND AGAIN THERE ISN’T ENOUGH ENERGY TO GO

I am represented by my shoes. Thanks to the people who take the shoes, label them, place them where people stop and look and ask: my shoes represent one of the #MillionsMissing. Me.

I am represented by my fiction. Specifically, ALL my royalties for May 2018 will go to support #MEAction‘s fundraiser – because they are being activists for all of us who have ME/CFS and need medical recognition, research, and training. I’m not delusional, trust me. I’m just sick. Lots of us are. You can ignore us – and make us even more miserable than we already are. But you can’t make us go away and not be sick, and, like AIDS patients before us, we are holding you accountable for this misery – because those wo do nothing when they could are enablers of the misery.

I am represented by my blogs. This one, and Pride’s Children’s blog – where there is a new post! About me learning to use a new marketing book which may help me find the people who will read and love and be waiting for the next book in the trilogy (coming – as fast as I possibly can – this year, or next at the latest). A curious thing (to me) has been a whole bunch of people signing up to follow it and liking the posts – without ever going to that site. I suspect the word ‘marketing’ kicked some bots into gear, but traffic is traffic. It’s difficult for me to market when the people who have left 5* reviews range from young women in their 20s to older men in their 80s. I’m greedy. I want more of you.

I am represented by my Patreon, where at least one lovely patron and I are having very interesting discussions – and the patrons get to read Pride’s Children: NETHERWORLD before anyone else. Curious? Drop by and read the free public posts – and ask yourself if you can REALLY wait another year…

I’m represented by my Facebook page, which is for RL friends and family, and a few extras (it’s not all that exciting, though I have boosted a few posts).

But I’m not represented by me. 😦 Because, as happened today, the spoons went to something silly and necessary that jumped to the top of the To Do list right during one of my four naps, and had to be done that minute. Today’s energy, and tomorrow’s, are used up already. And Sunday, I already know I won’t be able to go sing – there is nothing in the energy bank to allow me to do what I want to do. And I know perfectly well I’ll make myself much worse if I foolishly try. No problem – I can do it, go sing – but the cost will be days of staring at the wall, and I can’t afford them.

Thanks to all who are doing something and going to an event for May 12, ME/CFS Awareness Day – again, since we’re still not getting anywhere, and not only are we still sick, but new ones join us every day. I’ll be there in spirit. Spirits are invisible.

Living in a house for strangers

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

MY NEW JOB: LIVING WITH WHITE CARPETS

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

We made one of the two choices offered:

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

The easy choice: sell more or less as is

Clean things up.

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

Have the carpets cleaned.

Dejunk.

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

Put on market.

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

The hard and expensive choice: upgrades

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

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

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

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

Houses that don’t sell can hold up future plans

Which puts us in an interesting position.

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

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

After all our planning!

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

The cart has gotten before the horse

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

Not exactly sure how it has happened.

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

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

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

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

Consequences

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

And white carpets.

And white walls.

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

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


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


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


Sympathy and stories gratefully accepted.


 

Think ahead about accessibility in housing

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

NEVER THOUGHT I’D HAVE TROUBLE WITH STAIRS

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

Or is it?

Odd development.

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

I fell in love with the trees.

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

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

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

Free exercise?

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

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

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

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

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

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

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

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

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

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

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

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

The worst part?

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

No one wants to think ahead.

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

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

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

Do I want to stay in this house?

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

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

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

We moved in in 1981!

And will move out in 2018.

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

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

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

It’s about time.

Have you thought about accessibility?


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


 

Liberate the writing mind from the tyranny of time

PLAYING WITH TIME IS THE WRITER’S TOOL

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

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

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

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

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

Half our metaphors and clichés involve time:

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

Our most common question: What time is it?

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

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

So much so that we hardly notice it.

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

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

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

Loosening the grip of time

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

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

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

Manipulating time – for story

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

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

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

‘Going to the paper’ in real life, too

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

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

Respecting time

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

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

Pretty big order, there.

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

How do you finagle ‘time’?

Give us this day our daily pain

Bromeliad in green and red. Text: Any purpose to daily pain? Alicia Butcher Ehrhardt

WORTH OFFERING UP IF YOU’D GET RID OF IT?

Some days, if I squint at the daily/morning skeletal pain and muscle pain, I can call it the result of not stretching, or even ‘stiffness’ or ‘mild joint pain.’ synovial fluid in the joints needs to get moving, and the joints themselves have adhesions – everything’s, scientifically speaking, gummy.

Some days it’s worse than others. I don’t like it, but I can handle it.

But this morning, while resting in extension (like the Sphinx) on the floor, I was marveling that I’d never noticed that ‘Give us this day our daily bread’ from the Our Father has one of those little cross-linguistic glitches – the word for bread in French is pain.

No rhyme or logic to it, just a noticing.

The saints offered their pain up.

I’m not saintly or heroic, but I can do the same thing, try to handle every day with as little medicine for pain as possible (to ease the load on liver and kidneys in getting rid of the byproducts). I can ignore some of it, and a special seat cushion takes the brunt off, but there is usually enough left to be, well, significant. Too bad, and I say, “The heck with it!” and try to find something that won’t leave me groggy but will reset the brain.

Above that level, there is the way it takes over, and you do nothing else until stretching, isometrics, yoga, and chemicals are allowed, even if I end up not being able to think.

I feel for my friends who live with a lot more than I do – I had that experience as a side-effect of the various cardiac meds: every single one of them raised the pain to the I can’t think of anything else because I’m dealing with pain level. Glad the new cardiologist decided the benefits, if any, weren’t worth the consequences. Not that I would take them now, but it does help to have at least one doctor who’s okay with that; really reduces the stress.

I don’t understand offering pain up.

I’m not good at those theological bits. I don’t believe God gives other people pain or suffering that is waiting for me to offer my pain to be removed. But pain does teach you a lot about self-reliance, and getting help, and the limits of what you can take and do. Many people reduce or ignore what others magnify. I don’t see the point in taking on more just so you could offer up more. Seems like there are no good limits on that.

I do offer up acceptance and patience and such. I don’t ask Why me? because the answer is Why not me? if there’s going to be any at all. Not often, anyway.

I’m scared it will escalate – and I won’t be able to do enough to ameliorate it to the bearable level. I don’t think I’ll get rid of it any more – it’s too constant a companion.

I’m a wuss: I offer it up, but will do everything possible to get rid of it – at the same time.

A writer’s Patreon can be fun

Neon plastic dinosaur toys with text: A new venture, a writer's Patreon; Alicia Butcher Ehrhardt

FOR THE CHATTY WRITER!

I just finished another free public post in my new Patreon:

Workspace notes for Scene 21.2
https://www.patreon.com/posts/18317676
984 words

I’m using this Patreon as
1) a place to post the finished scenes in Book 2 (Pride’s Children: NETHERWORLD) as I create them – the first chapter of the book, Chapter 21 in the trilogy as I number continuously in case I ever get to put the whole thing in a single volume (tagged ‘Free public posts) is now posted in its entirety, a scene a post.
2) a place to talk about me, me, me: my writing process, my ideas, my scenes – for those with a burning desire to examine how I do what I do (still producing more ‘Free public posts’ for now).

Why? Because I need it; but more because my writing process produces 10 to 100 times more written material, per scene, than ever ends up in a scene, and that’s the kind of ‘reward’ Patreon recommends that writers produce for their patrons.

I’d love to see Ursula LeGuin’s work notes for The Left Hand of Darkness if they were available, so I’m enjoying producing a few of this kind of posts to see if they are attractive. My #1 patron loved the first one. We’ll see how her enthusiasm holds up.

And it got my brain going this morning to have something both specific, and not too hard (as it’s based purely on that background material I already produced) to get writing on.

Stop by and poke around the free stuff already there, and give me some feedback. Are you interested in having patrons?
https://www.patreon.com/alicia_butcher_ehrhardt

And for me, the question is: Will you be my patron?

I checked out many of the writing Patreons. It’s not an easy site to do searches, but patience was rewarded, and I looked at fifteen pages of them to see what other writers were doing, what they were offering as rewards, and where they were on their writing journeys.

For strict writers of fiction (short stories, novellas, novels), I noticed that many were looking for support while writing their first novel – with no previous material listed as proof that they could finish one.

It is continuous crowdfunding – so to keep patrons interested and coming back, the writer has to produce a lot of new material.

I’m among the more organized Patreons; it isn’t a requirement. I’m sure the pressures of keeping a subscription site going are considerable if you don’t have a lot of usable material already. There are a lot graphic artists doing things like webcomics and graphic novels. Alas, I lack the talent (or the interest to develop any I like) beyond producing at least a few more covers that scream ‘Alicia did it!’

When I get to that stage again, I might use this (if there is interest) to post not just the final cover, but some of the steps and the thinking. Again, if I’m doing the background writing anyway, some of my readers might enjoy watching the process.

Reward tiers, ie, cost to patrons

My lowest tier is for scenes, and the next lowest is for scenes + background posts. Patreon wouldn’t let me offer them for less than $1, but you are allowed to cap the number of payments you will make in a month (which won’t stop you from getting them, only from paying for more than one a month).

My intention is to post up to two scenes a month, and up to two additional background scenes a month (to give myself time and space to make them look good – and remove a few spoilers from my notes which were intended to be private or to overwhelm my biographer(s)).

Patrons will help shape what I put up for those Workspace posts.

There are rewards for the truly committed – I’ve priced them in consideration of how hard it will be for me to satisfy the requests, and warned some may bring my writing on that day to a halt (I can only use each energy spoonful once, and I get far fewer than normal humans get).

Patrons can stop patronizing (patroning?) at any time, and late joiners will have the advantage of getting more early posts for free – and the disadvantage of not having as many credits toward a copy of the book when it’s finished.

So it’s an easy thing to try out.

1) Read the public posts already there (click button in sidebar to take you there).

2) Decide if you want more.

Easy peasy.

Maybe I’ll see you there. Got questions? Wish I’d had someone to answer them when I started the Patreon, but even I managed it in a week or so.

 

Flexibility is worth working through pain

Setting sun behind woman leaping. What you give to keep yourself in shape? Alicia Butcherr EhrhardtIT IS HARD WORK TO STAY FLEXIBLE

To keep writing

Over this past week, while struggling with the chore of de-junking a house, divesting myself of decades worth of stuff, and getting my singing in, I have been physically exhausted (even though I direct the work, not do it).

The sleep I’ve been getting has been fractured, erratic, odd – and never deep enough.

So, the perfect time in life to take on another major task?

So, of course I did

As I mentioned in the previous post, I started a Patreon page for Pride’s Children; NETHERWORLD, Book 2 in the trilogy (see button on sidebar – I figured out how to have one with a link!!!).

Because, among other things, I realized that the moving tasks are ordinary. And while they need to be done, and every detail has to be supervised by me, and there has been a huge emotional content (you try capturing in a few scrapbooks about twenty years worth of homeschooling three kids!), it wasn’t hard, or tricky, or complicated, or complex, or even challenging.

Ordinary stuff. Every homeschooling family has tons of stuff to dispose of. Every family moving out of a long-time home has a lot of stuff.

But there is no great intelligence or problem-solving ability necessary; in fact, that gets in the way because methodical and utilitarian are the words that describe the process. Just do it. Make a decision: box it for the move, declare it object unnecessary, give it away.

What keeps your brain usable as you get older?

I’m convinced it is USING that brain, not letting it get fuzzy and lazy and go easy.

Starting a page on another platform for promoting your work – that’s complex and challenging. Patreon doesn’t make it particularly easy – I find a lot of applications which are developed for online and Windows use somehow seem to lack menus and a sitemap which works and guides that are more than basic – and I had to keep poking to find even rudimentary details. Such as which is the best way to get your money out (when you get any).

Inexplicably, for Direct Deposit via Stripe,  the payment page gave you a form to fill out which required banking information AND your Social Security number, but which didn’t mention fees.

And for Paypal, it listed some fees which could reduce your take.

Thus giving you the impression that even though Stripe usually costs money, the direct deposit part didn’t. Making it better than Paypal.

Stuff like that. (It’s not true, BTW. But you have to figure it out based on the amount being transferred, by going to the two payment methods’ sites and doing the mental work.)

Digging and logical thinking

It would be nice to have no fees to deposit your money earned into your bank account – Amazon does it, right? Amazon’s fees are probably included in their calculation of their cut – they just don’t break it out.

Doing this kind of mental work, hard, new, in a different and unintuitive (for me) format is worth doing – because it keeps me flexible – for the next thing that comes along.

I’ve found myself getting lackadaisical about learning tasks like how to control the network of TV and Netflix and Amazon video and Youtube – the spouse clicks thousands of times a night while organizing a couple of hours of something to watch. I let him do it, most of the time.

But watching TV is not my profession. Writing is. And I take it seriously for now, and as long as I can do it. And it changes continuously, but no one is going to make it easier for me.

So I charge in, do the work, maintain the flexibility to attempt and conquer the next challenge, and revel in the ability to still master the new.

It’s exhausting – and necessary.

And then there’s all the daily physical exercise

Which keeps the physical pain under some sort of rough control, so I neither take too much additional medication nor sit here in a haze of pain, unable to think.

But physical pain is boring. Not intellectually challenging.

So I’m not talking about it.

But I gotta get my mental ‘steps’ in, and push that to the limit.


Do you find yourself slacking off when there’s something new to be learned? Are you conscious that you’re passing up opportunities to keep the ol’ cerebrum functioning? Are you making an actual choice?


Don’t forget to visit the Patreon page  – the first chapter’s on me (pages are public), and you don’t even need to figure out how to create an account, and then have to close it. Feedback welcome, whether or not you will use the platform to read.


 

From a slow writer: NETHERWORLD in scenes

 

Not a working button; link in SIDEBAR

ONLY FOR THE IMPATIENT

Me at Patreon.

I can’t do an actual Patron linked button because this is a WordPress.com free blog (for which I’m very grateful), and you can’t sell things from them. [Figured out how to make a link available in the sidebar!!! – updated 4/16/18]

I am literally terrified to change anything on my blogs. It isn’t the money, though, unless you’re selling very well, costs can be more than you earn.

It’s change. There is so much change in my life right now, I can’t take on any more.

Plus it’s time – to figure out a WordPress.org site would take more time than it’s worth, and make NETHERWORLD even later. Seems counterproductive.

Click the link (not the fake button) – there will be a few scenes from the beginning, and in a week or so, all of the first chapter (Chapter 21 in the continued Pride’s Children numbering) for you to read.

For those who become patrons, I’ll post the scenes as close as possible to finishing them, as I serialized PURGATORY in 2013 – 2015, and they’ll get access to the completed book a little sooner than the general public.

Why?

I did this for myself, for the fun of it. I expect few of the people who say they can’t wait for Book 2, Pride’s Children: NETHERWORLD, to be serious enough about it to sign up for an inexpensive Patreon and get the scenes as I finish creating and polishing them, in my painfully slow and deliberate writing process. I’ve made it ‘pay per creation’, not monthly, in case my cache of startup finished scenes runs out.

I know I can do this – I serialized PURGATORY, publishing a finished scene every Tuesday for two years. It’s presumably going to be a bit faster this time.

There will be some extra content, available in special posts, because I generate at least 10 to 100 times more words than end up in a typical 2000 word scene during the writing thereof, and some of it is interesting.

Since I will be talking mostly to true fans, I expect to have some discussions and questions of a different sort than on this general writing/life blog of mine. If so, I’m hoping it will encourage the writing. That is if anyone signs up: I’ll do the writing anyway.

It’s a different beast from this* or the Pride’s Children blog**

For one, I have expectations of my patrons (and tell them right up front), which I’m always muting in the world in general (where nobody wants to hear writers talk endlessly about their ‘creations’).

It’ll be all about the book and the writing and the characters, and possibly the research and the ideas…

Not so much ego (though there’s plenty of that) as self-centeredness. Me, me, ME. And my book, of course.

Different focus, different content, and me as supreme ruler of… Oops! Don’t have any interest in running the world – too much work, not enough writing time. Just what I’d love to talk to people about, as they try to slip away.

(*General and writing and life posts here.)

(**The Pride’s Children blog was specifically created for those who want to be notified when NETHERWORLD is finished, and I promised not to use it for anything but that and the occasional sales.)


Finishing the trilogy and the story is still top priority

Writing fiction is still the main focus, and everything else comes to a halt when the brain and body give me a break and I can write. And I won’t be writing too much additional content/new blog posts at Patreon, but more grabbing ‘bits’ and throwing them out there from the massive archives.

And patrons can join or quit any time.

I’m doing this for fun – and for me.


Figured out how to make a link available in the sidebar!!!

Life imitates art for investigative journalism

A red typewriter with a manuscript in progress, with the words: Can a story contribute to the cause it's based on? Alicia Butcher Ehrhardt

EMPATHY COMES FROM SOMEWHERE

ALL my ROYALTIES for Pride’s Children for April 2018, Kindle Unlimited, ebook, and print, will be DONATED to: Help me help ME/CFS investigative journalist, David Tuller, PhD Public Health, Berkeley, get funding for another year.

David has been unbelievably hardworking this past year – and is up to speed. More than that, he is feared (that’s the only thing that explains it) by the UK psychologists who insist a disease I’ve had for 28+ years is both all in my head, and can be cured by 1) changing my belief system, and 2) doing more exercise.

I won’t tell you how useless it is to turn a real physical illness into hysteria. And that I would be in perfect shape if exercise helped: it is KNOWN to make everything worse for us – within very strict limits, I stay as fit as possible, but going over those limits will crash me for days.

Sympathy comes from watching someone else’s story

Beautiful real life ME/CFS (ME/CFS – myalgic encephalomyelitis/chronic fatigue syndrome) sufferer Jennifer Brea gets our sympathy, for her wonderful documentary UNREST (hope you’ve seen it) portraying her personal story, and that of others.

She’s much more photogenic than I am. The documentary was actually nominate for an Oscar!

She’s also had ME/CFS much less time than I have. I really hope she recovers – something which seems to work better for patients if they rest aggressively in the early years.

But to get EMPATHY for this disease

which has devastated the lives of so many millions worldwide, you either have to get the disease (please don’t) or live it virtually – by reading. Pride’s Children: PURGATORY lets you live with CFS for long enough to see how it gets into your bones and affects everything in your life. And yet it is only subtext to the story.

One more degree of difficulty for life, living with a tiny fraction of the energy able people take for granted.

I want more people aware of what someone with ME/CFS goes through, and it is similar to many diseases in some of its aspects. Chronic invisible illnesses hide everywhere among us, and we keep them hidden because no one wants to listen to the details.

As Pat Patterson, Amazon reviewer, says:

“You get a private tour of the life of someone living with an incapacitating disease.”

If you haven’t read, or know someone who hasn’t

This would be a good time to get them to read – even to gift them Pride’s Children: PURGATORY on Amazon.

As I’ve probably mentioned more than once before, I make about the same amount in royalties whether you buy and ebook or a print version, or borrow the book from Kindle Unlimited (with subcription or free trial). Paper is more expensive because there is, well, paper and shipping involved. But because it is a nice fat book, I’ve been able to price so that any of the formats available (including a KU borrow) have about the same effect on my bottom line. So you can freely choose which is your preferred format.

And do a little extra with your dough.


A brief description from Pat Patterson’s review:

“Kary is CLEARLY a hero, by any criteria you want to apply apart from armed combat, and she is the center of the book. She lives in isolation in New Hampshire, and writes; she suffers from Chronic Fatigue Syndrome, and it robbed her of her previous career as a physician, and gave her weak/treacherous husband the excuse he needed to rob her of her family. She has other grief in her life, but she does not share the pain casually.

“Andrew is an Irish actor/singer/modern day knight, who is on the verge of explosive fame, who values his privacy and guards it like a dragon guards his gold. Their paths cross in a late-night talk show, and sparks fly.

“Bianca is a drop-dead gorgeous actress who resents being trivialized by her spectacular beauty. She is attempting to pry credibility from the paws of the power structure, and intends to use Andrew as the crowbar.”

Hey, when your readers are so articulate, it’s much better to quote them. (Used with Pat’s kind permission.)


Thanks to Stencil for the ability to create images like the one above – their picture and fonts, my words.

Chinchilla peeking out between bed and dresser

A NEW HOME FOR GIZZY

It’s not a very good picture (I’ll replace it when I can), but my regular readers know that I have been stressing about either placing my chinchilla with new owners OR moving her to California to a yet-to-be-chosen retirement home.

Either was going to be stressful for her and for me (and for my very patient husband). From New Jersey to California, especially when we don’t have a new place yet and haven’t sold this one, would be … complicated.

But re-homing a pet is a major challenge in life, as anyone who has ever had to do it knows.

The search is over. A good friend, and former assistant, had mentioned a month ago she was interested in Gizzy.

And today Gizzy and her trousseau moved further south in NJ, to what is really the PERFECT home for her: younger, healthy people with experience with small mammals and large ones, and definitely pet people.

I’m not really a pet person

Everyone laughs at me when I say this, and points to the spoiling of the little grey furball by yours truly.

I’ve had Gizzy for over five years, and enjoyed most of it.

She only had to sit there and look at me for my heart to melt. Because she is so beautiful (note to self: must post better picture) and I’m a sucker.

When she did additional things, like sit on my lap, touch noses for a treat, or give me her paw (if you don’t melt when an animal does this…), it was gravy.

‘Owner’ is a misnomer – expect to be more of a zookeeper

But chinchillas are problematic as pets, since they are not really domesticated (disregard Youtube videos) because they are awake for very short periods, generally dislike being picked up or petted (Gizzy chose to sit on my lap), and run entirely on their own timetable. They are overproduced by unscrupulous breeders who sell them to people who don’t realize the chinchilla can live TWENTY YEARS under the right conditions.

They are wild animals, and as such, chinchilla shelters are overwhelmed by mistreated, ignored, or badly understood chinnies who are confined to cages forever. You are given the role of zookeeper when you get one, for relatively little return of affection (the stinker loves my daughter better than me, and behaves – for treats – much better).

You can’t return them to the Andes. And they won’t remain alive, like feral cats, outdoors. They can’t get too hot or survive much humidity. Go look all this up if ever tempted to buy one; if you want a chinchilla, please rescue one.

Anyway…

All of the above is understood by her new family/keepers, and I am so grateful they took her, today, in spite of all this (and have another family member with a chinchilla who told them the exact same things). There were many boxes – hay, treats, housing materials, the pieces to an enclosure, child-proofing gates, a roomy cage, volcanic dust, water bottles – all the stuff that either came with her (like the roomy cat carrier) or we acquired.

So Gizzy is squared away, and I can have the spare bedroom emptied, cleaned, and repainted – and will have to get used to that door being open, as it was unless a child was closeted away, until Gizzy became the rodent who lived under the bed.

I will miss her, but I am not really a pet person. She was my little love, and my responsibility, and I took that very seriously. This will be better for her. I literally can’t do the things she needs – each day it was getting physically trickier, even as I loved to have her walk on my back – when she deigned to.

Changes are unrelenting in moving us forward. There is no going back any more, only savoring everything for the last time here. It is upsetting after 37 years, and high time.


And I am proud of myself for figuring out how to take a picture with the iPhone, and email it to myself in a blog post. I guess the old brain still works a bit. I even put in the alt-text.

A memory of GUI Easter eggs

colorful blank cards, with three colored pencils, and the words: Where's an Easter egg when you need one? Alicia Butcher EhrhardtMEMORY TRIGGERS

HAPPY EASTER – to those who celebrate the holiday religiously, and HAPPY PASSOVER to my Jewish friends.

As a blogger, lately I am the most erratic of correspondents. I am simply overwhelmed by the enormous lists of things that keep getting added to daily, often by things that insist on queue-jumping, and being taken care of FIRST. Me, me, ME!

The passport dilemma

On Thursday evening my daughter casually mentioned that she had just received her renewed passport, because it expired this May, and the family has plans for a vacation in May. As I congratulated her on her foresight, for some unknown reason I said, “I’d better check mine,” even though it turns out we’re not leaving the country.

BUT airlines always want you to show them ‘government-issued photo ID’ before they let you on a plane, and I have only two forms of that, my driver’s license and my passport.

So I checked – and, it turned out, we had BOTH applied for our passports together, ten years ago when she was 16, and mine was expiring in May, TOO. Funny how that works.

So panic set in, because the process takes 4-6 weeks FROM THE TIME THEY RECEIVE YOUR APPLICATION. Yeah, I can count. Late May is barely days after those 6 weeks IF I get myself in gear and get that application in FRIDAY.

Those who know me also know that leaving the house is a big deal, because of all the spoon-using steps it requires: Getting the brain on. Taking a nap. Getting dressed. Filling out paperwork on the web on the government website (’nuff said). Getting a photograph of the appropriate quality (thanks CVS). Getting a Priority Mail envelope ready from among my office supplies. Remembering to take the stapler to attach the photo. Driving to two different places.

These are steps healthy normal people take without a second thought, adding it to their list of errands for the day. For me, this is Hannibal over the Alps.

All accomplished. Home. Damp the adrenaline. Stare at the wall for the rest of the day.

The driver’s license.

The next day, Saturday, the husband brings up the form which the State of New Jersey, in its infinite wisdom, seeking to remove the people who MISUSE handicapped license plates and placards from their lists, forces the people who really need them to do MORE PAPERWORK, including getting a doctor certification.

I need this. I look up the paperwork, and navigate a DIFFERENT government site, start up the form, and get to the place where it wants to know when my driver’s license expires. This is not information I carry in my head, since I’ve been renewing by mail for years, so I look at the thing, realize it is expiring this very last day of March 2018. Aargh!

It is almost a comical repeat of the PREVIOUS day’s excursion (I normally try to leave the house no more than once or twice a week, and reserve one for singing at church. This is Easter week.)

It turn out the spouse (who does the paperwork since he retired) has been meaning to get to this. We BOTH have licenses that expire this very day. Oh, joy!

I’ll spare you the details, except that they include getting documents out of the safe to satisfy the state of NJ that we actually exist and live where we say we do (to be safe I bring every document we have), we scramble to get there after I figure out that, even though the DMV in NJ is CLOSED on Good Friday, it is actually open on the Saturday between Good Friday and Easter Sunday (go figure), and we have until 1PM. Sort of.

I frantically try to find something that proves the DMV office is OPEN, and hit on the little camera they have for the inspection lines! Which has a time stamp of NOW, and shows cars in line. They’re open!

We get there.

The line snakes out of the building and halfway down the block.

Thank God – and all those who fought for them – there are handicapped parking spots right by the door, so I can sit in the car while the husband stands in line, and finish filling out the paperwork, and get everything ready for inside, so as not to hold up the process.

A kind official, seeing me sitting in my walker, moves us ahead a few spaces.

We are out of there with brand new licenses, good for four years (we’re probably moving to a different state THIS year), and a whole host of papers to put back in the safe. But I don’t have to drive to church on Easter weekend with an expired license, and all I have to do is make sure the insurance cards – which have been sitting in the Master’s piles since DECEMBER – get into the cars before we drive to church.

And the Easter egg of the title?

I remember the first time I saw an Apple II something with a graphical user interface – and a mouse! – in the Apple store in the Princeton Shopping Center while trying to help a writer friend of my grandparents (Aaron ‘Rod’ Marc Stein, author of 115 novels) choose his FIRST computer.

It was as if I had found my soulmate. I gently ignored the salesperson (who was having a hard time explaining everything), and used MacPaint on the demo computer, with the mouse letting me size an oval, and add jagged and wavy lines across the oval to separate into sections, sections which I filled with the patterns available, to create a quite decent EASTER EGG. I can still feel the rush!

I wanted to find an Easter egg picture at Stencil.com, but inexplicably for this time of year, couldn’t among the free images for the month.

You’ll have to use your imagination. I seem to have lost MacPaint somewhere in the past many Mac years. Created in an instant by a novice, it was a thing of beauty.

I will be dead meat tomorrow.

So be it. We’re singing for the 4:30 Easter Mass at the Princeton U. chapel, and I wasn’t able to drive in for Holy Thursday, Good Friday, or the Easter Vigil last night (have to be in semi-decent shape to sing, and can’t do nights any more), and I’m not about to miss today. So off to First Nap, then lunch, then Second Nap, and the husband is driving, which will save energy.

Tomorrow (and the rest of today) I will be useless, but that’s my life.

Too bad we have to pick a vacation hotel asap.

Have a wonderful day. Pray for me. And how was YOUR Easter and Passover?

The major stressor and the Gordian knot

SOMETIMES THE SOLUTION IS OUTSIDE THE BOX

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

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

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

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

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

The signs were many.

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

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

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

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

Full speed ahead, man the torpedoes!

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

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

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

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

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

Such a relief: I agree.

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

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

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

Update on Pi day 2018: almost alive

JUST SURVIVED ANOTHER SH*T STORM

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

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

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

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

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

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

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

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

Status post March 7, 2018

IMG_0080

STILL HERE, STILL ALIVE

A quick update to anyone wondering why there haven’t been any posts in a while. Busy, is why, and no brain.

House:

We are moving at the moving thing. Have had professionals in (yeah, we’re too old to do this one) for almost every aspect of the process of getting this house ready for sale. A person with CFS can’t do this. A person with CFS is doing this. Ergo, very little writing stuff.

New Jersey:

Just had a huge load of snow dumped on us. And it’s still snowing. At least 4″, maybe more, and the neighbor’s car is stuck in the street outside my house. Will it finally be our last one here? Depends on Mother Nature.

California:

Still the goal (I hope), but we haven’t been able to get out there to look, so aren’t even on a waiting list. The process slowly accumulates data, though. I have a better idea of what to look for in end-of-life care after our parents have all gone before us from Jan. 2014 to Jan. 2018. They all lived long lives (91, 91, 94, and 97), and we will always miss them. Some of their later years were NOT fun – possibly we can learn from them. One thing we HAVE learned is to get out of this house and leave affairs in tidy order, because it gets much harder with age. I simply can’t imagine how other people wait until they’re 85!

Writing:

Still working on getting reviews – just got a very nice one from the Midwest Book Review. Found a few tiny typos in PC1, and am just perfectionist enough to be in the middle of reloading the corrected files, and just human enough to tell you there are two errors of typography that I cannot correct. I have failed, they “doesn’t shows,” as my Uncle Charlie would say, and they will stay there to avoid tempting fate. 2011 Mac version of Word is to blame, and no, I’m not telling you what they are. I have some Pride.

Pride’s Children: NETHERWORLD

Sent off the next finished chapter to my beta reader last week. I am proofing and editing solidly before sending things out now, a chapter at a time, but long chapters (13K) take a while to research, write, and edit. I hope the rest goes a bit faster, but can’t wait until I’m someplace else and all the junk is gone, even if I have a simple table and one chair.

Health:

Finally agreed to try a new blood pressure med, Diovan, an “angiotensin II receptor antagonist,” whatever that is, supposedly with fewer side effects. After the debacle of last year, the only thing that made me reconsider is that I’m under quite a bit of stress right now, and occasionally get BP spikes in the evening, an alarming state of affairs. If I can find something I can tolerate that does its job, possibly I can avoid blowing a gasket until we’re resettled. Started up my cardiac rehab again (up to 75% of before) after getting the flu – and being out of commission for three weeks. Plus the flu gave me higher blood pressure, and kicked my nice low 60-66 heart rate up to 100 – MOST uncomfortable, because I COULD not meditate it lower. There are many reasons your BP can be up – perfectly reasonable reasons, but that doesn’t protect you from the consequences, so I’m being sensible. Again, assuming I can tolerate something. Not hopeful, but maybe it’ll give me a breather. Oh, and I’m in the process of finding a cardiologist who doesn’t RAISE my BP. Wish me luck. NOTE: since I started taking the stuff 3 days ago, I haven’t been able to THINK, but then there is that stress…

So that’s it, my pretties. Boring as all get out, but you are updated in case you were wondering, and I’m trying to do about ten times more than I can (sang in church again, FINALLY, the last two Sundays). And resting aggressively so I can be there mentally for my assistant as I am the final arbiter for dejunking. Hate it, hope a lot of it will be over soon, and I can get back to my nice calm writing.

And how are YOU?