Monthly Archives: January 2017

Do not allow Old Lady Medicine

Tunnel looking up at sky. Text: Don't accept old lady medicine. Your future is at stake. Alicia Butcher Ehrhardt.DOCTOR’S EXPECTATIONS DETERMINE YOUR MEDICAL CARE

Fight for your life and your chances

Husband hands me a magazine, the Health Check that our local hospital, Robert Wood Johnson at Hamilton (formerly Hamilton Hospital), sends out to everyone whose address they’ve ever received for any reason.

In it, it talks about the McKenzie method – a way for people to reduce back pain and sciatica by doing a series of exercises which reduce the pain and then strengthen the back.

And the suggestion to do this is given by the orthopedists for a woman who is ‘a dancer’ and very active. So she avoids surgery. And they are proud of themselves because they helped her ‘avoid surgery’ (PS: she had the same diagnosis I did, spondylolisthesis – vertebrae out of alignment).

THEY DIDN’T EVEN MENTION THE EXERCISES TO ME BEFORE SURGERY.

I was over 50, and had CFS already. I told them EVERY SINGLE VISIT that I wanted to walk properly again. They didn’t even send me for PT for walking.

Be warned: what comes is something you should know: doctors will make an arbitrary decision when you come in about whether you should have the ‘treatment for those who have a chance’ or ‘old lady medicine.’

And it will affect the rest of your life.

McKenzie back exercises

I do them every day. The book is called ‘7 Steps to a Pain-Free Life,’ by Robin McKenzie, an Australian physical therapist.

My PT taught me them – AFTER the orthopedic surgeon ruined my back.

When I wake up with sciatica (much less frequently now, and usually due to lying on my left side while asleep without the little pillow – for some reason that side doesn’t like flat), I head for the floor, and, within minutes, start working the vertebrae back to the non-painful position.

They wanted to operate again; all three of the surgeons I consulted – different operation each. I walked away. Still working on getting better at walking, but the surgery took me a YEAR to recover from, and had me back in the ER for non-existent pain control, so I’m not likely to repeat.

Why are older women more vulnerable?

Because, among other things, it’s easier. Cut, get fee, blame lack of success on the patient.

They don’t expect us to improve with exercises, or to do them, so they actually give us less useful PT (warm compresses?).

If you have an older relative, especially a female one, watch for this: the key is to DO YOUR EXERCISES – and to insist they give you ones which work – just like the ones they gave the young lady, or the teenage athlete. They will hurt, but it should be bearable if you’re doing them right, and it gets better. Takes me less than fifteen minutes on a really bad day, and I do them daily prophylactically.

Ask for ‘young woman exercises.’ Tell them you’re aware of ‘old lady medicine,’ and you don’t want it. Stay away from surgeons as long as possible – once cut, things are NEVER the same (there’s a whole section of my abdomen where the C-section left me with no feeling, and the hernia above my belly button has been ‘repaired’ THREE times – and is back).

Wish I could go back in time. What do you think?


Today is the last day of the 0.99 ebook sale for Pride’s Children (upper page on the right).

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The MOST important thing they don’t tell indie writers

Snowy forest night, black sky above. Test: Award winner! Bestseller! Get reader's heartbeat up! Alicia Butcher EhrhardtSOME INDIE AUTHORS ARE GOOD ENOUGH FROM THE FIRST BOOK

Traditional publishing believes it: they LIKE to take a beginner’s book, push it like crazy as ‘the next big thing,’ and then, if it takes, take credit for the success. If it doesn’t, most of the time (as that first book can take a number of years to create), we get articles in the NY Times and The New Yorker by disillusioned young MFA-program writers who thought ONE book was their ticket to live in Manhattan forever.

Hindsight is 20/20. You learn things later you wish you had learned sooner. And they can hurt you. Significantly.

And it’s possible this isn’t important for many beginning self-published writers, so no one has thought to mention it as specifically important.

Instant gratification is a plague on the modern world.

And the Dunning–Kruger effect is rampant. The link will give you a precis of the science, but the short version is that about the bottom 10% of people in competence in a subject think they know it all. Reread that sentence because Washington is full of it right now. The least competent think they are the MOST competent.

Maybe it’s a survival thing – if you thought you knew how to hunt the mammoth, even though your hunting skills were terrible, the mistaken belief allowed you to leap in there with your spear, and it was successful just enough of the time that the gene didn’t die out. Once in a while. And possibly is the origin of the phrases ‘fools rush in’ or ‘beginner’s luck.’ But I digress.

How does this apply to new indie authors?

Here it is: the thing I wish I’d known about – and had paid attention to: your book launch is critical, because in the first month you get a bit of free publicity (new books) from Amazon, and the DATE of that launch determines its eligibility for awards, and you need to know if your book is good enough and apply for those awards at the right time.

NOBODY IS OUT THERE SEARCHING THE NEW INDIE BOOKS TO SEE IF THEY ARE ANY GOOD, AND GIVING THEM AWARDS.

I published late in 2015. That made me ineligible for most 2015 awards (their deadlines had passed), and ineligible for 2016 awards because Pride’s Children: PURGATORY was published in 2015.

I didn’t need to publish then; I could have waited, would have waited if it I’d known the consequences. Early 2016 would have lost me the Christmas 2015 season (during which I sold a few books, very few), and I was so focused on getting that thing out there, that I didn’t even think about awards.

TO GET AWARDS, YOU HAVE TO SUBMIT TO AWARD COMMITTEES – AND PAY AN ENTRY FEE.

The fees cover the administrative costs of most awards, and the prizes (part of which may be subsidized by some foundation). They are set just high enough to discourage most new authors from frivolous submissions. And if you’re determined that the book should pay its own way, are an expense that may be hard to justify.

NOBODY will know that you applied for an award. Other than the financial one – which could be significant – there are no downsides to applying. IF those committees are honest, this might be your only chance to be considered on pure merit (their subjective definition, of course).

And the whole process runs up against the other part of the D-K effect, that the most competent people are  hesitant to say they are competent in a subject – because they actually know how much they don’t know. Many top scientists are modest and humble people.

There is a surfeit of Arrogance in the world.

Self-promotion is something most indies have to work at, and we’re all tired of the relentless self-promotion – Buy my book! Buy My Book! BUY MY BOOK! – of the modern Twitter feed.

But once in a while, a new – or even a first – indie book is a carefully-drafted, polished tome that would have merited consideration by an award committee – but didn’t know the basic facts of submission, because, even though they spent years reading the forums, blogs, and boards before publishing, the FACTS above in bold were never mentioned.

I would have liked to try.

‘Bestseller’ or ‘Bestselling author’ is USEFUL in marketing. And that should be achieved by sales, which most indie newbies won’t have. But ‘Winner of the _____ Award’ IF the award is a real one, and a significant one, is also very good for a book.

I would have liked to know it could be important. I screwed up.

If that’s arrogance and ego, so be it. The awards committees would have let me down, the money could have been wasted.

But the simple facts would have been nice to have, so I’m putting them out here on the off chance that someone else in the newbie self-publisher category will see this, and at least know to look up the awards and their submission guidelines and dates.

And that’s my screed for today. Are there hidden gems, condemned by the very lack of knowledge of their indie authors to remain hidden? What do you think?

“I coulda been a contenda,”

Marlon Brando, On the Waterfront.

Or so one likes to believe.


 

Spent today pitching a movie never to be filmed

READING SCREENWRITING BOOKS IS GOOD FOR NOVELISTS, TOO

It counts as research.

I’m reading – rereading in many cases – Blake Snyder’s three Save The Cat books.

These are well-known screenwriter tools, as is the Dramatica I use for plotting and character development.

The many similarities between the different forms of presenting a story allow significant crossover: a story is a story is a story. Each form is also very different from the others, because once they go out into the real world, a book and a play and a movie script are implemented differently.

But plotting Pride’s Children: NETHERWORLD was not the reason for the reading. Plotting is all finished, and in the scene I’m working on right now, a movie is being pitched to one of our actors. I’m using the device of a pitch meeting to get all the information needed to understand this particular movie into the story in the most efficient way – without seeming like an info-dump.

Isn’t writing a whole movie a bit much as backdrop for a novel?

Of course it is, but you know me: if it’s going to be in the plot (and, with actors, you’re going to have movies in the plot), and I can give it verisimilitude (the appearance of actually being real), I can make you believe the one or two not real points in the rest of the plot.

Machiavellian, you say? Why, thank you.

But I’m not the only one to do things like this – heck, people in fantasies invent whole worlds and religions and ecosystems.

What attracted me to the idea is the fact that Snyder says, of the pitch:

“Poster. Logline. Simple story spine. Eager and inspired telling of the tale. Ten minutes, tops. That’s the pitch.” (p. 123, Save The Cat Strikes Back)

Which fits perfectly into my scheme to sketch out enough of this particular movie to last for the first half of NETHERWORLD, without taking up that much space in the book. After all, I’m writing a novel, not a movie.

I can trust that most people who read have seen plenty of movies, and, given the highpoints, will see a movie where there is only a ghost of one. My readers want to see people working (I hope), but they have no interest AT ALL in seeing the enormous amount of work and time it takes to produce a major motion picture.

Blake also says:

“Regardless of how you organize your story, once you’ve finished your pitch… shut up! The first one to talk loses. If you give into temptation and can’t help spewing more stuff after you’re said ‘The End,’ you are indulging in a pitching no-no called Selling Past the Close.

Shutting up

I’m going to follow his advice. What do you think of it?


*** Pride’s Children: PURGATORY is on sale for 0.99 until 1/30/17***


Thanks to Quozio for easy quote images.

It has been my privilege to pretend to be normal

An autumn sunset. Text: Too Late, A prequel short story, Pride's Children. Is it my child? Alicia Butcher Ehrhardt

COVER REVEAL – TOO LATE, a Pride’s Children prequel short story

For the last few days, even though I haven’t changed, and rarely leave the house (and have done so even less than normal because the coughing reduced me to a quivering winter mess), I have had the excitement of participating, however vicariously, in the excesses of the new administration, and the marvelous Women’s marches worldwide.

It has been a privilege to be on Facebook, and write about my reactions, and pass on creative work of others. The activists knew where to start: make a BIG statement.

I like to think I would have gone, had I been able. Let’s leave it at that, so I don’t have to remember how much I hate crowds and uncertainty and noise and the feeling of not being in control which goes along with even peaceful demonstrations. And the fear of being cannon fodder should anything go wrong.

I am so proud – but I am not, by temperament or inclination, a participant or a rabble rouser or a shouter. Or a member of a group. That’s not, for better or worse, the way I think.

My charism is the individual effort

‘Charism’ is a good word, an important word. Wikipedia defines it as ‘in general denotes in Christian theology any good gift that flows from God’s love to humans.

When I was the only female student in my cohort in the joint Nuclear Engineering/Electrical Engineering/Physics PhD program at the U. Wisconsin-Madison, I wondered if God wanted me to be that, if that was my charism: to bring the presence of women to a heavily-male program, and that partly kept me working when things got hard (as graduate school does). There was a woman in the cohort ahead of me, and one behind, but it was a big program.

When I worked at the Princeton Plasma Physics Lab, I was one of three women PhDs – and wondered the same: was that where I was supposed to be? Again, a hotbed of male PhDs, where I learned early to identify myself as ‘Dr.Ehrhardt’ on the phone or be taken for a secretary (those same secretaries were my friends, the ones who knew me). ‘Dr.’ cut through a lot of BS.

And then I got sick, lost the physics, and became one of a whole host of women with a mystery disease (CFS) which mostly affects women. I maintained some small amount of individuality by being a homeschooler, using all that training for SOMETHING, even with no energy.

And then came writing.

It is in writing that you are truly an individual, because the kind of novels I write are NOT, in any way, a collaborative effort. I must have been struggling with that feeling of not mattering AT ALL to insist on doing everything myself.

I discovered I can do this. And I hope it will all be worth it, because the writing gives me joy, and the readers who get me, REALLY get me.

And this is what I do with my tiny bit of energy. Because there isn’t enough for both, I have to pour it all into the novels, and let other women (and men) have my admiration and support, whatever that means.

Because I am writing a trilogy about two women, one disabled, and the one man they both want – and why and how – in the backdrop of the world of entertainment, where fame is as fleeting as the last thing you did.

And I think it WILL make a difference.

Try my writing (click on the cover on the top right – 0.99 until Jan. 30. 2017). It is what I do, what makes me unique. Tell me what you think. Is it worth a woman’s life?

Write memories down or risk losing them

Autumn tree and bush. Text: What's on your trip down memory lane? Alicia Butcher EhrhardtTIME PASSES SO FAST – AND YOU CAN’T GO BACK TO TAKE PICTURES

This was in my potential blog posts, dated March 23, 2016 at 1:10 PM – and I had forgotten most of it:

“While I was napping, I was overcome with memories – memories which I am terrified of losing from my head, memories I haven’t shared or saved or written down, memories that will come from the detritus of making ourselves small to move to a CCRC*, and which I have no time to save right now.

“Memories which might be read to me in the nursing home so they would spark real memories.

“It is a huge project, even writing down what I do remember, and asking those people who still remember some of the pieces to tell me those pieces.

“The present could take so much time in locking down those memories, time I won’t have while I can still DO some things, still create a few more.

“Today I went out for daffodils, brought some in, and wonder if I took energy I don’t have – or released some restlessness that needed a place.

“And here I am writing – that takes more time.

“MY memories. For me. For our kids. But mostly for me, though I want to give them theirs – and Gary is NOT getting back to me with the digitized videotapes**.

“And I don’t have time this week anyway.

“One more thing for the To Do list.

“I could at least start, ‘An annotated Life,’ as a Scrivener project. DONE”

What you don’t write down may disappear

*A CCRC is a Continuing Care Retirement Community – and we’re planning to move to one as soon as our last chick is settled. I need the pool and gym facilities, and we need to be free of the not-fun-anymore chores of taking care of a house and yard and having to drive around for the doctor appointments.

They are not for everyone – and they are sort of permanent, so we will choose carefully.

My main concern will be quiet, and congenial people to do things with. After this last election cycle, we will be VERY careful in picking the state as well as the people.

There is something like a 50% chance of developing dementia if you live to 85, which is a sobering thought for a couple.

I’ve seen amazing things done for people with memory problems, which include photos, music, and other memory triggers. But you have to pick a place which will do that.

Before they get any older

**Even though it was a lot of work, and I was always exhausted, I took the darned camcorder everywhere, forced people to smile for the camera or the recorder.

But I never had energy for the next part: moving those precious memories to newer storage methods, making copies, annotating the contents beyond the label on the spine of the tape cassette.

By the time I really started panicking, 30 years had passed, and I had at least 18 tapes in everything from Beta to Super Hi8 (no digital!). Through Thumbtack, after posting a project, I found a person not too far away who seemed to understand what I wanted, and could do it: digitize those memories onto a state of the art hard drive.

Gary, of Films-4-good, did a wonderful job, but he had to fix our camcorder and find a beta machine (because the ones we thought we’d preserved were dead), so it took a while – and I felt the pressure of having those carefully saved memories out of my house.

They are safe now. We have five copies on five hard drives, so each kid has one – and therefore it is offsite storage. Phew! Annotation may take a while – even watching them will take a while – but the main part of the chore is done, and the relief is enormous.

Gary also processed the Butcher family movies, narrated by my Dad who is no longer with us, so I have digitized home movies and footage from the turn of the century. The TWENTIETH century – and the time of Mexican dictator Don Porfirio Diaz, with scenes from Mexico City back then, and my great-grandfather Nicolás García Colín and my great-grandmother Rosario.


Don’t delay – and keep updating.


***Pride’s Children is on sale at Amazon for the ridiculous price of 0.99 until Jan. 30.***


Did you take the pictures?

I knew what to do a year ago

SKILLS NOT USED GET RUSTY

I spent my working time today gathering everything I have in the way of text for the short story, a prequel to Pride’s Children, that I’m getting ready to publish on Amazon.

And panicking.

When I did the ebook formatting for PC: PURGATORY, I spent so much time tweaking Scrivener’s Compile function, to get everything to look just right, that I worried I’d never get the details out of my head.

And yet here, a bit over a year later, I can’t remember ANY of it.

Somehow, wisely, I left breadcrumbs for myself

Because it is something I send to people who request it (after they read my post on structure), I took the trouble to clean up the Novel With Parts template that I use, which is just Scrivener’s template of the same name, but with many areas prefilled or suggested.

And with the same Compile setup that I used to produce the novel’s epub file.

But it is not a short story template (reminder to self: produce one), and a 167K novel needs more parts and sections than a 1.5k short story.

But it has been extraordinarily difficult to remember why those parts were there, how I figured out the headers and footers and front and back matter, and making the decisions to delete what I don’t need.

I am nervous because I’ve never published a short story on Amazon

and it is very short.

Even with some fill-in bits, it is very short. Even if I tell people right up front that it’s short, I have this feeling of impostor syndrome.

And yet, there are no words I would add to it. It is the right length for what it tells, and a critical bit to understand Andrew. It took months to get right, to make spare, to give both a flavor of his mind and an account of an important happening which has changed him.

It’s free on Wattpad and on my blog, but some people haven’t read it here (please do so if you like). And I will have the temerity to set its price at 0.99, which, by coincidence, is the amount I’m charging today for the whole of Pride’s Children: PURGATORY.

Pricing messes with my mind. Since I also do it differently from many indies, I can’t follow easy guidelines. I want the story on Amazon for anyone who would like their own copy in a Kindle file with a cover. This authoring thing is weird.

I’ll figure it out. The next short story will be easier. It isn’t brain surgery. It’s just a little story.


Too Late: coming soon. If it hadn’t been for the shenanigans in Washington, I’d be finished.

Will I ever feel as if I know what I’m doing?

A day of peaceful marches succeeds

AMERICANS HAVE THE RIGHT TO PEACEFUL ASSEMBLY AND PROTEST

It’s guaranteed by our Constitution:

The First Amendment states that “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”

Funny how many people don’t know that.

I spent a good part of the day on the computer, wishing I could be with the peaceable* men and women who marched, all over the States and the world, to remind the incoming president that his power is nowhere near absolute, and he is the servant of the people, not their master.

Friends of mine who posted pictures were in DC and Oakland and other marches, and one of my children was at the San Francisco march.

I am very proud of all the people who, in the face of frustration, marched with peaceful intent. They were marching even for the people who voted for the present administration, because those people will need healthcare and job rights, too.

They put their money where their mouths were: it took planning, organization, time, money, and effort to get that many people – literally millions – to the many march sites.

Crowds scare me – I avoid places I can’t get out of quickly

How much of that is me, and how much decades of chronic illness and no energy, is debatable, but I hope I would have made the effort, somewhere, if it were physically possible; I would have liked to march with friends.

It is not enough to be there in spirit. The Millions Missing protests this past year had people with CFS send in their shoes to represent themselves, and a pair of mine went. Symbols are important, but it is sad that my shoes could do something I cannot.

There have been marches by disabled people – but they are usually much smaller and require a lot of support.

My stamina is zilch: the marches were for reasonably healthy people who could travel, assemble, walk the distance, stand and listen – and then get home safely. These are the times when I miss that the most, when everyone else gets to go.

Most of the time I pretend I live in this room at my computer by choice; today that delusion was very hard, especially when my friends were posting selfies of themselves with the monuments on the Mall in the background. I got to go with them that way; I spent the day watching, reading, listening.

And sleeping. Thrilling it was not.

And glad I could stop worrying when the message came from San Francisco: Home safe.


*The previous version: If you want peace, prepare for war.


What’s better, working for justice or preparing for war?

Spending a rest and recovery day well

Tree in the fog. Text: A good listener is far rarer than a competent lover. Travis McGee

THIS IS MY FIRST ATTEMPT AT A SHORT POST

As you know if you read this blog on a regular basis, short isn’t my strong suit, though I do have a few Drabbles (100 words) posted here and on Wattpad.

My intention is to do some daily posts with no special topic that deserves a thorough treatment, but to post what’s going on.

I used the ‘almost well’ day to create a new cover for Too Late

And drag out all my graphics skills for a polish. I’m not quite back to writing fiction (that requires my whole brain), but there are still tasks that have been on the To Do list too long, and creating a cover for the short story prequel to Pride’s Children, Too Late, was one of them.

I went through a huge archive of my photos, looking for one that spoke to me, and didn’t have one of my children right in the middle of the foreground, the way I usually take pictures. It also had to be taken with a steady camera at a decent resolution. I’ll put the cover up tomorrow. The intent is to publish Too Late within the next day or so.

Mostly stayed off Facebook and didn’t watch TV

Wasn’t too hard – other people weren’t on either, and TV news is something I never watch anyway: they say the same thing over and over and over.

I’m not feeling all that chipper yet, so just as well. Just a few comments here and there on the blogs I visit – probably more inane than usual.

Read a bit of Travis McGee

Nightmare in Pink is where the quote came from. I didn’t go check – I’m probably paraphrasing. I can read John D. MacDonald over and over and over, and a few bits are dated, but nothing much has changed. I did notice Travis doesn’t like NYC – but then he’s a beach bum, and doesn’t like cities much. He’s right, though. Most people go through life without being listened to properly and enough. It doesn’t count if your listening time is spent deciding what YOU will say next.

But reading was a pleasure, because I’ve been so sick with the stupid coughing that I literally couldn’t focus on a page.

Getting ready for an ebook newsletter sale Jan. 22

I finally managed to get The Fussy Librarian newsletter to accept an ad for PC, which will appear on Sunday, Jan. 22, so I put it on sale as of today – I haven’t been getting to things in a timely manner lately, and they want you to make sure your sale price is in effect on the day your ad is shown.

That’s long enough for a short.

What did you do special today?


Oh, and thanks to Quozio – I hadn’t been able to use their software for a while, and I tried again today, and it worked.

Writers censorship by insiders still censorship

A page of roses. Text: Artistic integrity is for the writer to decide. The road to hell is paved... Alicia Butcher EhrhardtACTIVISTS TELL ARTISTS TO BE POLITICALLY CORRECT?

I received an email today from someone in my own community which reads:

Alicia,

Please, please, PLEASE change the name from CFS to ME.  I have just watched [X]’s TED talk, and that only reinforces how important it is not to continue using this dreadful name. We must NOT add to the wrongness of all that is wrong or not happening with this disease.

[X] might well be putting ME on the mainstream map. …

Thank you, [NW – name withheld]

And it raised my gorge, for reasons I will now explain.

A little background would set this in context

I started Pride’s Children at the turn of this century, set it a few years later into the time period 2005-2006, and locked it down in my memory to keep the details accurate.

It took me a long time to write, a long time to get it right, and a fair amount of time to publish.

Promotion is not my thing, but I’m womanfully shouldering the task, which used to be a purely indie/self-publishing task, but has now become a task most writers, traditionally- or self-published must undertake (or risk selling no books – traditional publishers only market those books expected to be big sellers or for writers in their top 1-2% – everyone else gets bupkis in promotion).

SINCE publication, a bit over a year now, among other efforts, I have asked a lot of CFS people to read, and possibly make a mention of Pride’s Children on their blogs or sites – and haven’t even had the courtesy of a reply.

I shrug – figure they have more important things to do with their time.

My own Facebook ME/CFS community has been far more supportive, and people there have made a huge effort to read (even when they rarely read books any more, and even more rarely something of PC’s length (167K words for the first volume in a trilogy) and complexity. And several have given me the incredible additional gift of a review – and I know how much it costs me/them.

I’ve asked other people connected to the ME/CFS community to publicize, read, review – again, no interest.

Fiction breaks down walls

I emphasize that fiction is one of the prime ways (cf. Uncle Tom’s Cabin, Black Beauty, To Kill a Mockingbird… in novels; movies such as The Philadelphia Story with Tom Hanks) there is to get through the barriers people put up against involvement around their hearts and minds.

I understand; the world used to have a disease of the week, and now it is more like the disease/charity/cause of the second on the internet, TV, and the mails. ‘Compassion fatigue’ is real.

I think I’ve written well; some readers tell me so.

And you’ve heard endlessly my statement that

the more there is a message in the fiction, the better the entertainment value must be

because people don’t like being preached to. Have an important message? Don’t tell people – let them find out for themselves through your characters.

So why did this email bother me so much that I’m blogging about it?

  1. Historical context: for a disease that has been called yuppie flu, CFIDS (chronic fatigue and immune dysfunction syndrome), SEID (recently – something to do with our post-exercise exhaustion), ME (for myalgic encephalomyelitis or encephalomyopathy), and others that didn’t stick very long, it is disingenuous to decide that ‘ME’ (with the first description- one I don’t understand because I always though myelitis was an inflammation the covering on the outside of nerve fibers (Google: infection or the inflammation of the white matter or gray matter of the spinal cord), and I don’t even remember what ‘myalgic’ means (Google: muscle pain). In any case, ME always has to be explained.
  2. Everyone’s CFS is different, though there is a core of symptoms (like a Chinese menu – so many from Column A, so many from Column B). I was diagnosed with CFS in 1989, and nobody did anything then or since to see whether there’s inflammation somewhere on my spinal cord (nor would I let them – the symptoms are bad enough).
  3. There is no approved designation worldwide – the European ME people say we US people with CFS don’t have the same disease, for example.
  4. There are no approved tests – up until now, and especially in 1989 and 2005, the diagnosis was made BY EXCLUSION of everything else they could think of that gave you the same symptoms. We’re hoping for research that will nail down a cause, and possibly give hope for treatment, at least for those who are more recent victims, or possibly not full of co-morbidities after all these years.
  5. Insurance companies and the CDC and the NIH change their designations all the time, for reasons which they always claim are ‘the best.’ I’ve seen a lot of these in 27 years, and few have stuck, and each one claims to be the one which will put us on the map (and wastes a lot of money on talk, administration, and stationary each time).

Another name change could come along tomorrow – and I hope it will when they figure out the cause – some exotic virus or virus fragment or new quasibiological entity – which will give the whole thing the correct context (cf. HIV). CFS is as good as any of these other designations – and has the advantage of being far better known (and not pronounced ‘me’ as in ‘I have me.’)

But of course the most important part is that I choose what I write

And was careful to make some of the above distinctions (ones which would be known in the time period the book was set in), before using CFS consistently in the rest of Pride’s Children, BECAUSE THAT’S WHAT WE USED BACK THEN.

And I guided the reader in and out of those distinctions with care and deliberateness to emphasize the (at that time and still now) UNKNOWN quality of this illness.

If you own a copy, it’s in Pride’s Children, Chapter 2, where Kary explains it to Dana. If you don’t own a copy, the Look Inside feature on the book’s Amazon page includes that chapter in the sample.

C’mon, wouldn’t it be an easy change, and shouldn’t I play ball?

In addition, the email sender shows a cluelessness about how a book is written, published in ebook and in print that tells me blithely to put in hours, days, weeks to change something – because X gave a TED talk.

Good for X (who belongs to one of the organizations I’ve gotten no response from – an organization within a few miles of me, by their address). This is X’s mission – along with more advocacy that I am very grateful for – and which I cannot do. X has put a life on hold (no choice in the matter because, well, of CFS. ME/CFS. ME.) and chosen to use connections I can’t do anything but drool over. I am happy for X.

And one of X’s project, which may make X famous (15 min.? hope not), had a very catchy and expressive name, which was JUST CHANGED to something entirely different I don’t like!

But I spent FIFTEEN years writing the first third (and outlining the rest) of what I consider a major novel with a CFS main character, before any of this other stuff happened (X has been sick for five years, and was in elementary school when I started this project).

I started serializing the final polished novel in 2012 – when X’s project was not even begun.

And there is no way in hell I’m going to make a change to my published story to accommodate anyone, just because they may end up being (probably will – those connections I mentioned – and a HUGE amount of effort) much more famous than I am.

I guess that covers it:

  • it was inappropriate to ask me to change MY book
  • it couldn’t be done, even if I wanted to, without an enormous effort on my sole part
  • and where were you, NW (name withheld) when I asked – I couldn’t even get you to read
  • I don’t think, personally, that CFS is all that dreadful a name; the name recognition, you see

It isn’t ignorance; the person (NW) who wrote has known me and my book’s existence for FAR longer than those five years I mentioned.

Thanks for listening. It is good to get these things written down – and out of my mind, where they tend to fester.

I will happily listen to opinions civilly offered.

Writers: grab YOUR unique promotion opportunities

Woman in fur coat holding sparkler in front of lights. Text: Target Yourself. How are you like your audience?I’M FEATURED TODAY ON BOOMER CAFE!

Hey! That rhymes!

I am a Baby Boomer, born between 1946 and 1964, by the Boomer Café definition.

We are the Post-WWII babies, and there are a lot of us. Many of us are getting to retirement age – and able to do as we darn please.

I’ve been reading Boomer Cafe for a while now (though not since 1999, their founding date!), submitted an article now titled, ‘A baby boomer writes the novel she always planned,’ and they published it today!

There are a lot of hard parts for beginning self-publishing novelists

One of them is the perennial question: who is your target audience?

Because the natural answer for newbies, even if they have written a baby board book, is EVERYONE! Which is not as silly as it sounds, since board books are not bought by babies, but for them, by siblings, parents, and relatives, of all ages.

Pride’s Children: PURGATORY, my debut novel, uses every technique I could learn to appeal to men and women of all ages, and teens mature enough to understand adult themes of love, marriage, work, jealousy, obsession (teens = fans?), getting what you want, and sacrifice. The sex and violence and language ‘rating’ is PG-13 (minimal) because I’m interested in story, not mechanics.

But wide POTENTIAL appeal makes it a bear to market: try planning an ad or outreach that will grab the attention of male teens and their grandmothers, and you’ll see what I mean.

Wide appeal for a book means no generic marketing

So you have to look at yourself, see how you are a member of the demographics you are included in, and figure out how to use that to present your book and yourself as author to diverse groups.

If you write straight Science Fiction, for example, there are oodles of promotional opportunities in newsletters, blogs, lists, sites, and at your online retailers. Your only problem (and it is a doozy) is how to make yourself stand out from all the other SF writers and their books).

I read and I learn. What I have learned since PC came out is something I suspected before I published: regular indie marketing strategies aren’t going to work for me and this book.

Which means one thing: diverse marketing, and a different marketing strategy for each group, with the understanding that there is no more homogeneity in the ‘groups’ than there is in my general audience.

Call it ‘trait marketing’: What do I have in common with Baby Boomers?

And that’s where the inspiration for this particular article came from.

First, to clear that away, I have no interest in writing non-fiction articles for magazines, online or in real life. I am a novelist, with books to write and sell, not a free-lancer looking to support herself by writing non-fiction. That’s a different calling, and I don’t have it.

To the extent that I do, this blog and the one for the books (prideschildren.com) are my non-fiction outlet, and I don’t expect them to pay for themselves or my time from what I write there. I get satisfaction from putting my thoughts in order, from the possibility of an eventual book or two if one arises from the posts because a bunch of people seem determined to write the same way I do (it could still happen!), and from the visitors and commenters here and on the blogs I visit.

But it is almost a cliché that many people think that some day they will write a book – and, until I actually finished one and published it, I was in that group. And that was the perfect topic to pitch to Boomer Café, it met with their approval, I wrote it – and it’s here!

Writing for exposure is not NECESSARILY a bad thing, is it?

Boomer Café doesn’t sell ads. The only way I can use their site to get my book in front of the other Boomers who visit there is to write an article which gets published. And provide something of interest for the subgroup of Boomers who might like to at least consider whether they should attempt that novel.

Anyone who writes to me after reading that article will get pointed in the right direction, and that will be a small partial payment for the advice and many kindnesses other more-advanced self-publishers have given me.

If people who read the article want to, Boomer Café has posted my cover, and a link to Pride’s Children: PURGATORY on Amazon, so readers can check it out and purchase if it appeals to them (or they want to see what it looks like).

And I couldn’t hope for any more than that!

I’m exploring myself and Pride’s Children for that kind of publicity opportunities

This past year, I’ve done a lot of hand-selling, to readers and writers I’ve met on Goodreads, Wattpad, Facebook, and via blogs such as ThePassiveVoice and the many others I follow and comment on. That will continue – it is a more personal approach, and has worked well in getting some awesome reviews. It is not a given that I will get a review or a new reader – my success rate there is about 50% for people who will try reading. More importantly I have found almost all of the blurbs for the book that way.

I’m determined to make this a career, rather than a hobby, so I expect PC to pay its own way eventually.

The question to take away is…

What is there in common – and how do I use that to entice people into reading the first few pages, a couple of scenes, or a chapter or two?

BEFORE that, I have the usual: book title, description, cover, editorial reviews, ratings, Look Inside feature, ebook sample, reader reviews, author page, numerical rankings within the various categories and subcategories (if you scroll down far enough on the Amazon product page for the book)…

Even price. Readers have their own opinions about what books are worth; I have priced at the lower range of what traditional publishers charge for ebooks and paper copies, but higher than what indie genre writers charge. And run a sale at least quarterly.

AFTER that, after TRYING, readers know if they might like a book or not. I trust readers as I trust myself to know what they like to read – and whether I’ve done my job to supply that.

I’ve already met some new and interesting people on the Boomer Café site – maybe some will turn into readers.


Thanks to Stencil for the image above and the ability to add my own words.


Readers: how do you like to be appealed to?

Writers: what special niche marketing do you do?

Looking forward to hearing from you (hint, hint)!

Sometimes there’s a reason you can’t write

A road going off into the snow. Text: Who suffers? That's whose responsibility is it. Alicia Butcher Ehrhardt

COUNTING ON YOUR IMMUNE SYSTEM?

Just because you’re sick doesn’t mean you can’t get sicker

It has been an extraordinary two-month+ period, and I’m only now realizing that it was kind of not my fault. But it also was.

I was seriously worried that my ability to continue to function was deteriorating further. Since I have very little of it, losing more is a continuing concern.

I fight to retain mobility, and still hope, if we move to a place with the right facilities, to be able to regain some. I need access to a gym and a pool, and a safe indoor space to practice walking.

I hope, if we move, and reduce the list of things that go wrong with a house, I will have more time and energy for myself, to write with.

But all of that is useless if the brain has decided to go down another notch.

The past ten years have been mostly on an even keel

I got things, I felt sick for a day, the ‘thing’ went away: my always-on immune system seemed to fight it off. Other people got things like colds – I felt as if I was going to, but most of the time didn’t.

I got cocky.

And then ‘level’ and ‘normal for me even with CFS’ changed – and changed drastically

I’ve been sick, sick enough for it to impair my cognition, for most of the past ten weeks – but didn’t realize it.

My first written notes about the problem pin it to the beginning of November 2016, when I felt ill for a day in a pattern I’m used to, my over-active immune system seemed to deal with the problem, as I have come to  expect, but I developed a cough. I assumed I’d fought of another virus, but was experiencing its aftermath anyway.

Most people who have a post-viral cough will fight it off eventually, because their immune system keeps working away at it. This is where ‘walking pneumonia’ comes from: is it actually a form of pneumonia the body fights off well enough for the person not to need to be hospitalized for the pneumonia. It is serious; the person will feel tireder than normal, not quite right – but most people will fight it off.

For a few of those people, however, the continued coughing, and the strain the coughing and the viral infection put on the system will make the person vulnerable to catching something on top of the original.

So, first I had the post-viral cough. It went on a month – I visited the doctor, and she listened carefully, told me the lungs were perfectly clear, and that these things sometimes went a long time (she’d had it last herself). I was extra-tired, and the visit itself came from energy I was trying to protect. “Call if it doesn’t go away after the holidays,” she said.

What went wrong/wronger?

Another month passed. I was going to call her at the end of the first week of the new year (last week), when I realized a new symptom had appeared: wheezing, always a bad sign. I called the next day, she couldn’t see me, I was told to go to urgent care. Urgent care did a chest Xray to rule out pneumonia or something worse (like lung cancer, which can present as a persistent cough), diagnosed bronchitis (very uncomfortable, I tell you), and sent me home with a five-day course of Azithromycin. I took the last pill this morning.

It should have been enough.

But: During the week after New Year’s, husband developed a nasty cold – and cough. He assumed he’d gotten what I had, and, here’s the kicker, didn’t do anything special to avoid passing it on to me. To be fair, it was a reasonable assumption.

We should have paid far more attention: the cough he had was nothing like the one I had.

The fear of further deterioration

I haven’t been able to write consistently for weeks. Even the post-viral cough was enough strain on my system that it took that little bit of functionality and the little bit of good time I can usually count one every day.

It wasn’t just life (as I may have written). Yes, there was a lot going on with the last chick leaving the nest, and the holidays. I would have expected, did expect, not to get a lot of writing done under the year-end conditions. But, looking back, this was worse: almost no writing – even of blog posts – was going on. I’ve stated before I have 30-40 posts started – and I couldn’t complete one. Apparently, finishing up a post and publishing it takes a little of that ‘good time’ for the final effort to add a few headlines, to make sure the whole is coherent and has a point. I don’t just stop at some point: I clean up, reread, get the ducks in a row, edit, polish, check references, add links… It’s not hard on a normal day, but it does take a bit of that precious energy.

Every disabled person, every chronically ill person, fears one thing: getting worse.

Healthy people don’t constantly think about becoming unhealthy; they even sometimes feel invulnerable (teenagers, especially!). But, for the rest of us, our body has already failed to heal to full functionality, so we know we are vulnerable. Too vulnerable.

The first instinct when things seem worse is to hope it is temporary, and it will go away. If there is a new symptom, I watch to see if it will resolve, or if I can find a workaround.

But I have never in the past worried that I should be extra-vigilant when in that state, if indeed it is a state – and not the permanent downward step I fear.

I have learned a new and painful lesson: I am able to get sick/sicker. I am not immune to catching other things if I’m already under strain. My immune system, compromised as it is, can fail even more.

And there are some nasty bugs out there – and they don’t care whose body they hitchhike on.

My brain came back this morning

Somewhat. A bit. But at least coherent in the way I am used to (so, closer to my ‘normal with CFS’).

And the first thing I’ve done is to write all this down, to record it for my own edification (and possibly yours).

The big fail – which I hope not to repeat – was husband assuming he had what I had, and not taking the normal precautions against spreading whatever he was fighting off; compounded by me not insisting. When he’s sick, he is not thinking of anything but being miserable (it doesn’t happen that often – lucky stiff).

He handed me things, coughed in my direction, left tissues everywhere.

But it’s all really my fault (it always is): I let him hand me things, picked up tissues from the floor and emptied wastebaskets, didn’t insist he take precautions (because mostly that’s the way we’ve always operated).

I am the one who is vulnerable – I am the one who is going to have to remember this lesson, and enforce best practices from now on: if someone is sick, stay away, wash hands frequently, insist they pick up their own debris, and do everything I can to protect myself.

Because I am the one who can’t write if she doesn’t.

Hope this saves someone else from worse. What say you?

How to fix post holiday blues

Bleak winter landscape with one tree. Text: Trouble starting a new year is normal, Alicia Butcher EhrhardtUNIQUE TO DO LIST ITEMS DRIVE ME CRAZY

It’s surprisingly hard to get back to some kind of routine after holidays and a year ending – so many one-of-a-kind items – from tax paperwork to getting parking stickers for the next term to all those doctor’s appointments which have been put off to seeing friends in town for only a few days.

I am ready for all that to be over, and get back to routine, any kind of routine. Even snow – which is predicted for this weekend.

I should be writing up a storm – instead of chasing down the meter reading on the solar panels.

Anyone else in the same slump?

PWCs (people with CFS) handle change very badly

We’re bad enough with things we do routinely, such as laying out today’s pills, and watering the plants.

But each new thing attempted requires the use of a scarce resource: good time (i.e., when the brain is on).

I normally reserve that time for writing, and have ‘FIGHT for the RIGHT to WRITE‘ where I can see it easily.

But this time of year – between the end of one and the slipping-into-routine beginning of the next year – is a constant barrage of exceptions.

EVERYTHING claws its way to the top of the priority list

We have a solar system. On the first of the month I get an email which reminds me to send in the meter reading so they can credit us with SRECs (solar credits – don’t ask me to stop and look up the acronym!) so that we will eventually get a small check for any excess energy we pour back into the grid. There was a $500 extra cost when we were required to pay for and install a new meter (the government wouldn’t take our reading of the old one) if we wanted it to wirelessly send the solar company the reading – and of course we said no thanks.

The idea is that, once a month on being reminded of the need to send this information, I will go down to the basement, read the meter, and, while down there, perform the cleaning of the system that involves pouring bleach into the pipes and the pump, which will otherwise grow algae.

Except that I’m now having to force myself to at least go down to the basement once a day, because moving is difficult, the heart rate goes up, and my chest hurts if I do stairs. And yes, I have an appointment to visit a cardiologist for reassurance/whatever already scheduled.

So it had to be done, now – and I cheated. I just got the number and emailed it in and didn’t do the maintenance part. Which means half of the task – and a trip to the basement out of no energy – is still pending.

I am probably not unique

Everyone has these things on their lists; everyone has more stuff to do at the end of the year and beginning of another.

But I’m drowning, my assistant hasn’t made it for a week (she’s sick, on top of the holidays), and there is no end in sight.

Why am I telling you any of this?

Because I normally blog – and I have 30-40 half done posts, none of which I seem to be able to finish.

Not being able to finish a blog post is new to me, and I’m scratching my head. I understand how writing doesn’t get done – I can’t focus if I know I’m going to be interrupted in 15 minutes – but I hadn’t realized how even blogging needs some coherence.

I’ve been worried about obvious mental deterioration, and then I realized this morning that I’m probably not unique, but I am getting older, and changes in habitation location are coming, as well as a whole slew of problems related to that, and that the world probably won’t come to an end if I don’t have my handicapped parking space set up before this Sunday (another task which took time this morning) but that it was wise of me to try calling on a working day (they assure me it’s in the works, but they were just off for eleven days).

I’m working on it

That’s my motto for everything.

I will get to it, whatever ‘it’ is. Eventually.

Routine will return.

I will be able to finish something (I’m almost ready to hit ‘post’).

And now I go to find the proposal from 2004 from the HVAC people that shows we paid for – and didn’t receive – a duct cleaning back then. Because I promised the lady I’d send it today. Because THEY shred their records older than ten years – and I never throw anything out.

Because $300 is not peanuts.

Oh, well.

Happy New Year to all of my bemused readers (bemused at this odd post, not bemused themselves).

Stay warm (or cool, if you’re in the southern hemisphere). Breathe. Pray for the crazy lady.

Peace out.

You, too?