Tag Archives: ME/CFS

The major stressor and the Gordian knot


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


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!

New review post on Pride’s Children site


If you’ve wondered where I’ve been, part of is these last two weeks has been entertaining a guest: Mr. FLU.

And yes, I did get the flu shot back in October (I always get one), and every year as far back as I remember; possibly that’s why the worst effects lasted about a week.

But getting over the whole thing is no picnic. I am on tissues with extra softness – by necessity. I can’t wait for my heart rate, which went up to 100 bpm and stayed there for days during the worst part (normally, for me, around 60-66) is driving me crazy because it is still hanging up there at almost 80. It’s exhausting in itself.

Life and my Universes

Also had lovely houseguests.

And today, by dint of I don’t know what force, I finished a scene I started, according to my notes, on Jan. 21. Way too long, but had only sketchy notes as to what absolutely had to go in it, no rough draft for this one, and no brain. I swear it feels no different, finished, than the ones I have more to go on than a title and several Dramatica appreciations. I even listened to it in the robot voice, and can pronounce myself satisfied (if I ever get there).

New post (with cookies) – thanks, Stencil.

New post at Pride’s Children with a lovely new review that has lifted my spirits.

Said spirits have been on a rollercoaster ride; still trying to figure out how to post about the stress load I’m carrying – and will be until we’ve moved.

Be well.

The Discipline of the Long-Distance Writer


I am NOT a sports fan, but Philadelphia is around the corner, and I’m pretty sure they put a great amount of very hard work into preparing for their win. As did the other team – so there is that elusive luck quantity about peaking at the right time, and having everything work out when you need it.

BUT: it is not luck that wins most times. It is luck on top of preparation. Most ‘overnight successes’ aren’t. And if you have the great win right out of the starting gate, you still have to do it again – witness the number of debut award-winning novels whose authors can’t repeat the win. And are never heard from again (unless they whine about how hard it is in the pages of The New Yorker.

Everything about Cary Tennis’ aphorism:

The most heroic thing a creative person can do is to live an orderly life so the work can get done.

is true. I don’t get anywhere without hours at the keyboard.

I’m acutely aware that, because I start at such a low level every day, a little thing like the cold that is messing with my mind is enough to render me useless to my chosen profession for both the days when I’m actually sick, and the aftermath days when I wonder where the Mack truck came from, because everything aches.

It’s not the pain that bothers me – lots of people live in pain. It’s that after a certain amount, I can’t think. And I’m way over that amount right now, sitting at my computer trying to think.


When you have choices, at least some of the responsibility for what gets done in your life is yours. If you choose to go to the gym regularly, your body may be stronger and more reliable. If you could, but you don’t, the deterioration or lack of strength is partly your fault.

I have to get back to my basement exercises as soon as I can breathe normally, so I don’t get worse.

One thing at a time!

Use what you have in your writing

I was wondering where that extra edge of tension would come from in the scene I’m writing, and it occurred to me that I’m living it.

A common phenomenon for people who live with ME/CFS is the PEM crash. PEM – post-exertional malaise – is another one of those phrases which minimize a real disaster. PEM is really post-exertional exhaustion – a crash that can last for days after you do something more than you could really handle at the time. A crash that is made worse by trying to do things before you’re past it. A crash that is created, somehow, by taking energy out of your muscles with adrenaline.

I don’t know if it’s the adrenaline itself, being very slowly processed by a damaged liver, or if something else in the fragile body system is triggered by the push that precedes the crash. There is no known cure, though fluids, proper nutrition, and LOTS of rest can help.

It is another of those realities which cannot be ignored.

We’re watching the Olympics, and hearing about the athletes pushing through their pain and damage. And about permanent damage that can end an athlete’s career. Sometimes, they can work through the pain; sometimes, if they do the hard rehab work, they can improve their performance. Sometimes they try to ignore it; sometimes that works, or works long enough for them to achieve the next milestone. Hard to know whether they can take the chance – and win in spite of an injury – or whether, this time, it doesn’t matter how much pain they can tolerate in a broken foot, because they still can’t use it right.

I always come back

So far. Eventually.

But I’ve both speeded up (due to experience and practice) and slowed down (due to having been ill longer, and, that favorite of everyone, getting older).

I’ve reached an odd-enough spot that I want to document it, to see how to improve process, if possible, or to just move it along this time.

The immediate projects are competing fiercely

And they are getting done – albeit at a speed that would make a tortoise cry: my parents’ final tax returns (VERY long story) have been in the mail long enough that it’s the IRS’ problem, not mine. Yay! But talk about soul-sucking, useless tasks that teach you nothing you can use in the future.

I have a couple of small typos/errors I want to fix – but will have to re-load all the information about making files for Amazon and CreateSpace into my head, and then learn the new task: how to post a change in a published work. Good to know, not so easy to acquire; I’ll have to take notes, too, or I will forget.

I’m putting off working on putting Too Late, the Pride’s Children prequel, up on Amazon because it is TOO SHORT, and I fear a backlash. From whom? Dunno. But my fertile mind throws up roadblocks whenever it can find them. It would throw up roadblocks if I decided to STOP WRITING and just ENJOY OLD AGE. So it’s no reason to stop.

On the record: I am now more afraid of doing a short story wrong on Amazon and forever ruining my reputation than I am of having gotten my parents’ tax returns wrong and being jailed by the IRS for tax evasion. Easier to laugh at that once I’ve pinned it to a blog post.

The long-term move is back on the horizon

We have to get out of this house. Not because it isn’t lovely here – it is – but because the maintenance is something I can’t help with any more, and it is unreasonable to let the husband do it all, and difficult to find people consistently to do it for you. Plus the complete social isolation of rarely getting out of this room.

But now, following the last days of all four of our parents over the past three years, we have a whole lot more questions to ask and details to worry about that we hadn’t even realized – and won’t be in a position to control at whatever age they happen, because you are not all that functional at that time of life. Way too many things went wrong. Things like nurses in the hospital who won’t make the effort to make sure their patient can HEAR them. Things like ‘hospice’ – a lovely idea from the 70s – having been turned into another Medicare supplier which is farmed out to the lowest bidder, and has failed, dramatically, when most needed. They don’t even have hospices any more – just services dependent on funding and staffing. Once would have been bad luck. Twice is systematic.

So the thought of moving near where at least one of our children might locate permanently (San Francisco), rather than generally to California and taking care of ourselves, has reared its ugly head to mess up the choices. But most people don’t move out of a retirement community once they’re in (except when they can’t pay for it), so choices made now are crucial for the future. When we won’t be in a position to make them for ourselves.

This is what I do when I feel a tiny bit better

I hope being able to think a few things out, and blog about it however lamely, means the cold is on its way out. I’ll still be a dishrag for a couple of days, but the drive to write SOMETHING, and to try to make it coherent, first comes back when I realize I haven’t posted in a while.

And if I can use that idea in the scene in progress, well, I won’t say it’s been worth it, precisely, but I may be able to profit from it anyway.

And here we go. And there’s another bunch of semi-connected thoughts out of the mind and onto the page.

And I’m more terrified than ever of getting the flu!

How’s your winter going?

The Greatest Generation is now gone


At the beginning of 2014, my children had four living grandparents 90 or over.

As of last week, they have none. Husband’s dad, a good man, at 97, the last of our beloved parents, now knows if there is an afterlife or not. Our parents are missed, and there is nothing anyone can do about it except remember them.

It is sobering to think about now being the matriarch and patriarch of anything: husband and I are both eldest children. My parents did that so well for so long, and I can still remember my grandparents in Mexico doing the same thing. And I am not capable of doing any of what they did, keeping the family together by having everyone over for dinner on Sundays or Mondays, holidays and birthdays. I have been the beneficiary, and can’t pass it on. Our kids are currently in San Francisco, Boulder, and Troy, NY.

I have so many stories, and I have passed them on (ask my kids – I’ve talked their ears off), but I have not the energy to write many of them, not while I’m still writing fiction myself: there are only so many hours in a day I can use, and stories are best transmitted in person.

Making new traditions

I have come up with the idea of us going to a resort once a year, all of us. Not at Christmas or Thanksgiving, but at a convenient time. We can see each other every day, spend time with slow Mom on the beach or in the pool, and then those who can will take advantage of whatever the resort and local area have to offer, and maybe gather for dinner. For that talking part. A way to bring together someone with no energy and descendants with it in abundance. As long as the old folk can travel.

This way, I reason, they can go to the in-laws (when they have them) for holidays without trying to be in two places at once.

We’ll see if it works out; but we can’t maintain the family homestead, an awkward but much loved house with way too much space and maintenance, and too many stairs, just so the small clan can gather at a time when travel is horrible and in a place (suburban central NJ) where you have to go elsewhere to do anything. I have failed the task of ‘everyone is going to Grandma’s house.’

So be it.

At home in Mexico, a gigantic extended family still gathers – but we don’t go.

Now to focus on the two of us

I have to make my tiny daily allotment of energy cover getting out from under the responsibilities, which are becoming overwhelming (mostly for husband), and out of the social isolation which comes from having little energy to go anywhere.

Selling a house and moving, possibly cross-country, and settling in to a retirement community, is non-trivial, but it is only going to get harder. Most people leave it too long, and move in a crisis. I need things I can’t walk to here: a pool, a gym, facilities like a sound studio – and many of the Continuing Care Retirement Communities (CCRCs) have them. We need to find friends – ours here are moving away, or are no longer with us.

And I am aware of how delicate my ability to write is: everything that has come along has stolen days worth of writing because it needed that focus and clarity I can only achieve for a couple of hours a day at most.

The last of the big brain-sucking tasks,

finishing the tax returns for my parents, who were both American citizens even though they lived in Mexico since 1957 (and Pepita when she was a child), was finished yesterday. Daddy’s went with the postman.

I gritted my teeth and filled out Mother’s immediately following, aware that if I set the second task down I would have to learn from scratch all the tasks and arcane instructions – when I could force myself to do it again some time in the future. It was such a huge task (for me – not for a normal human), and consumed so many hours since June 2016 when my sisters gave up and asked me to do it, that I despaired of ever finishing. Mother’s is sitting in a sealed envelope for the postman today.

Each return was four simple pages. Above the surface there is no evidence of the frantic paddling below that reading and filing take, IRS worksheets and arcane bits from processes intended to make it hard for the very rich to take everything with them (ie, hand it over to their rich heirs). To finally end up at the same point for each detour: $0.00 – insert in box X of form 1040.

And on the bottom line: no tax owed. Which is good, because, IIRC, IRS penalties for filing late are some percentage of the tax owed.

I made every mistake possible during my filing of this twice-in-a-lifetime (mine) paperwork, including, yesterday, deleting the just completed return by writing the IRS instructions over it. Don’t tell me I should have let a tax accountant do it. Just believe me that it would have been far worse, and on someone else’s brisk timetable (the horror!).

I can do this stuff: but it takes days’ and days’ worth of all the energy I have.

And I learn nothing that I can use again. I fervently hope.

I’m a writer now, and still working

I plan to finish Pride’s Children, Books 2 and 3. Several nice people have claimed they’re waiting for the rest of the trilogy. As long as life and brain hold out, that’s the plan, and I’m very aware it doesn’t depend on my intentions. I hope God isn’t laughing too hard.

With the latest marvelous review, I have made some new connections on Goodreads, and possibly learned some useful marketing tips.

I despair at where the energy will have to come from to do a better marketing job, but obscurity is the other option, and I’m not happy with that, either.

When I do settle in to the writing, though, the deep pleasure is still there; my beta reader is content and says I haven’t lost it; and I still experience that moment, for each scene, when it all clicks and I know: that’s the way it really happened.

Given that Olympic skiing is off my list of possibilities, I’m glad I have the writing one for the story only I can finish.

There is so much yet to learn

A huge part of life is doing the best I can so that, if they every figure out ME/CFS, and it isn’t too late for me, I will be able to take advantage of the medical research, and maybe write faster. Or go skiing again.

My support group on Facebook has other people like me, and invaluable sustenance (as well as overwhelming loss). We CFS folk have little hope, but losing it all hasn’t happened for me yet.

If I did, I have no idea what I’d do all day.

But we are the oldest generation now, husband and I, and we don’t give up. Yet.

That’s why I’ve been missing from the blogging world. Hope you’ve all been okay.

How to self-edit fiction with AutoCrit


I keep getting into online discussions with editors (cui bono?) who insist that no writer of fiction can or should self-edit. Not for publication, they say. And they cite the example of so many self-published books which are full of typos and grammar mistakes and spelling errors as proof.

Yes, there are many self-published books which need better editing. According to Sturgeon’s Law (Theodore Sturgeon, 1918-1985, American SF author and critic):

90% of SF is crap, but then 90% of everything is crap.

My paraphrase, but it will serve. It is now being applied particularly to self-published work, but applies to traditionally-published work as well. We can argue about the percentages, but the point is that much work gets published without meeting someone’s standards.

Some of us care. A lot.

I happen to believe that the best gift an author can give herself is to learn to self-edit well enough for publication.

The reason is simple: If you can learn to produce quality work all by yourself, the READER gets the unvarnished best the writer can produce, UNALTERED by someone else.

Voice unaltered. Tone unaltered. Style unaltered. Judgment unaltered. Story unaltered.

The thing which makes a particular writer unique is preserved for the delectation of the reader. Artisanal. As all writing should be.

And it only comes from really being aware of what you write – and why.

Okay. Now that we have the WHY, let’s have the HOW:

Think of the best quality in published traditional work. You should aspire to better that standard.

This is not an easy task. There is learning. And failing. And getting appropriate feedback. And yes, making mistakes in judgment and execution.

But setting yourself a rigorous process, adding to that process as you learn, and following that process isn’t that hard. It just requires becoming aware of the difference between the story in your head, and the story on the page, and not quitting until the difference is as small as you can humanly make it. We call this ‘work.’ Hard work. I have made a contract with my readers that I will do this work before they get to read what I write.

It is work that is rewarded by making you a better writer. Big reward. Useful reward. And, in the long run, it will save you money, frustration, and dealing with people who don’t get your vision for your own work.

Enter the final mechanical stage.

Once I have used everything I have learned about writing from my teachers, books by Sol Stein, Donald Maass, Blake Snyder, the Dramatica team, and all the reference books off- and online, I have a scene or a chapter which needs to be cleansed of dead skin.

It isn’t ready for the beta reader until it is finished, but my ‘finished’ needs the final mechanical stage. I use AutoCrit for this purpose. As close as I can get to the original AutoCrit program which is basically a counter of terms and a comparer of those terms against a database. There is a new version; I’ve learned to ignore the new parts because the last thing in the world I would pay attention to is a program telling me what to write. Writing is my job.

I want the mechanical editor to tell me what I’ve done, in a very black-and-white way. I want it to count for me, because counting adverbs is the most boring thing I can think to do by human. Or counting the number of times a four-word phrase (each possible four-word phrase in my text) is used. Or counting the number of times I have used words or phrases (and showing me where they are). And making a list of unusual words.

For this I use certain specific sections of AutoCrit.

After pasting the text in, I visit the following menu items:

Strong Writing: Adverbs, Cliches, Redundancies, and Unnecessary Filler Words.

Word Choice: Generic Descriptions, and Personal Words and Phrases.

Repetition: Repeated Uncommon Words, Word Frequency, and Phrase Frequency.

For all of the above, I ignore the program’s nagging (such as ‘Remove about 3’ when it somehow decides that I have too many occurrences of ‘that’), because for me, AutoCrit is only an automated counter doing the dirty work for me because I’m too lazy to do it myself (and know that humans given mechanical tasks make huge mistakes because they get BORED).

I do NOT use other sections. Why? Because they judge me. Or someone wrote a little piece of text to put there that sounds just like it. Once we go from comparing the number of times I use ‘that’ to the average for fiction in their database, I have all the information I want from an algorithm.

Pièce de résistance: how to use the information.

This is the writer’s job: every single counted detail from my text, generated easily by a program, is now subject to the final test: Is this the way I want it?

In other words, it’s back to me. Not with suggested ‘improvements.’ Just counted, and displayed for me to decide if it serves my final intent to have the text stay the way I wrote it (remember, I considered it pretty much finished before I tossed it into AutoCrit).

If it shows me clichés from its database that I have used, I have to decide if the character using the cliches uses cliches. Some do, some don’t. Clichés are neither good nor bad. For some characters I will keep the cliché but try to make the sentiment unique again – which leads to some pretty interesting substitutions from that subconscious brain.

If it shows me I have used one of my personal words a certain number of times (my worst lately tends to be ‘get’ and its variations ‘got’ and ‘getting’ and ‘gotten’ – all of which I’ve input to my personal words file in AC), I will decide 1) if there are too many, 2) if they are the only way to say something (rare), 3) if they have a literary intention (parallel structure often leads to word repetition the database can’t account for),…

Generic Descriptions usually have to be separated into two piles: those in dialogue (and even those benefit by tweaking) which mark a specific character; and those in the internal monologue where I dump what other people use a narrator for (It was a dark and stormy…), ie, description. I may have a very good reason (really) for using the generic description, but it doesn’t hurt to be reminded to check.

I never, ever, use AC’s Homonyms tab, because it is excessive, and I can spell, and have NEVER yet found myself using the wrong homonym. Okay, maybe two or three times in the 3.5 MILLION words I’ve put through AC, but NOT by using the Homonyms tab. Too much stuff to process – there are a lot of homonyms in English, and they will find all of them and offer what seems like every other word in a red box. There must be a better way to do that mechanically (don’t mark every ‘you’ because it might be ‘ewe’); meanwhile, I put those words I might misspell by accident into my Personal Words file (though, thought, through, thorough).


First, examine every single kind of counted word or phrase that you might not otherwise catch, and

Last, decide whether and how to fix it: you’re the author – it’s your baby.

Very simple.

It still takes time, and a lot of effort, and a lot of thinking, and going back and forth to Scrivener with the text of a scene.

I find I can do about 5-10 corrections at a time, after which I save the results in Scrivener, get a fresh copy of the text, paste it into AC, and re-process that tab/menu/submenu.

All other types of errors – spelling, punctuation, point of view consistency, chronology and plotting, content (was this character a red-head?) – should have been eliminated (by me, the spellchecker, and a dictionary/thesaurus) before I use AC.

But I care – and I’m not using my beta reader except as a first reader. For what should be finished work, so she has as clean an experience as I can make. I don’t want her pristine read complicated by anything that distracts her from the flow; when she tells me something doesn’t work for her, it is going to be taken very seriously.

And that is how I use AutoCrit (I have a Lifetime membership – worth every penny) to do what no human editor should be asked to do (count) and what I don’t want an editor to do (change ANY of my words, which includes suggesting I change them). They may not be happy about this, but it is the least traumatic way for me.

I really should stop even clicking on those ‘everything needs an editor’ posts. Their authors, some of them editors, hate people like me.

Life happens in between story moments


Where is the rest of life? FRIDAY

One illusion novels maintain is that nothing of importance happens in the moments the writer chooses not to present on the page.

I bank on that bit of prestidigitation myself; I’m not against it, but I have to remember to consult my story calendar, the plot, and logic, when I fill in one of the prompts I always use:

Timing considerations: Since last scene, or last scene for this character, what has changed/happened? Does it make sense? Does it have conflict opportunities? Does it have to be dealt with?

A novelist fills the gap with a word, a flashback later (if the reader is lucky), or a jump cut, simply switching to a new scene with the assumption that readers can figure it out.

And we do. Movies no longer need those silly calendars showing the pages blowing off – we get it.

There is still, in most novels, a sense of moving forward in time, and not bothering to document the smaller bits that make up existence: characters eat, take a taxi, work.

But readers have an innate sense of when an author left something important out. The reader’s mind goes, “Huh?” Too many of those, and the reader is no longer interested in the story because, truly, there isn’t one.

We’re watching a couple of streaming TV programs: Hinterland (set in Wales) and Crossing the Line (set in Europe), and have these little discussions about linearity of plot, because either they do things differently on the other side of the pond, or we’ve lost some important ability, because we don’t get things much more often than we expect not to understand.

It’s a minor annoyance when watching TV, and my guess is that something got cut between the script and the final edit – different people doing the work? The shows are atmospheric enough to carry through (though the first seems both skimping and padding because I think I could cut it from 90 to 50 or 60 minutes and it would be improved considerably).

Life is boring

And full of little details – things which have to be done – but which contribute nothing to the eternal verities. I spent my good time this morning talking to online pharmacy and doctor’s office personnel – and got no writing done. Eventually, the pills I depend on may make their appearance, and I won’t be in so much pain I can’t think, much less write. As many of us are finding, those drug-seekers out there (some of which are probably just getting crappy medical care, and are experiencing pain they should be) are making life much longer and more boring for those of us who are trying to follow the rules.

It’s always so: the rules are tightened, but the people who are breaking them aren’t affected, and the ones who were not doing anything wrong have to deal with more paperwork.

This makes the future scarier

I can sort of cope now – if I don’t do anything time-wasting such as trying to concentrate on my writing for a few hours.

Some day I won’t be able to cope at all, and someone else will have to do this stuff for me, and they probably will neither do it right nor efficiently, and I will have no choice but to suffer the consequences.It is laughably difficult to leave instructions for such things as “don’t feed me carbohydrates,” or ” I can’t lie comfortably very long on my left side without a VERY thin pillow under me,” or “I HATE raw tomatoes.”

I hope that doesn’t happen too soon.

Meanwhile, I cope day-to-day

Badly, because my coping skills are somewhat age-dependent, as everyone’s are, but much slower than most people’s to start with.

I really thought I’d be further along – that I’ve learned to gather the input for a scene faster, and turn it into prose faster – but it isn’t even keeping up with the increased pressure of “thing that must be done.”

The big ones

Settling my parents’ estates and filing the required tax returns – an exercise quite pointless, as there will be no tax money in it for the government.

Finding a retirement community – I have realized lately that financial information (ours and theirs), and knowledge of floor plans and meal plans, is barely the beginning. As I dig deeper, I find the questions of medical care when you can’t navigate it yourself, and even simply paying your bills in that condition, are much more important. And we haven’t even STARTED visiting the Assisted Living and Skilled Nursing components of the Continuing Care Retirement Communities (CCRCs), which are looming as more and more important to choose correctly from the beginning, because you’re going to end up in them if you live long enough! And you will not be gleefully looking forward to moving in to them in most cases.

Dejunking this house/Selling this house – a difficult pair of things to do requiring millions of decisions which we can repent of at leisure.

And the very worst of all

I resent not being able to work myself out of the current many holes. A lady doing the fast walking jog many people think is called ‘running,’ but won’t mess up her hair or get her too sweaty; the man with the white ponytail and the limp who goes out for a painful walk regardless of the temperature or conditions most days; the children – especially the one little grandson who spends HOURS trying skateboard tricks or shooting baskets when he visits next door – all these people are ‘working on it,’ my standard response when asked about anything, but they are actually working on something.

Me, I’m stuck. I get one little thing done, painfully, and the ‘things needing doing’ merely provides the next customer in a Black Friday-long line.

I gotta get out of this place, but it may end up being the last thing I ever do, at this rate.

I make a list, read it, pick one thing to do. It is the A1 now, and the system is to get it done, because it is the log that is holding everything in a jam. But I’ve been telling myself that for weeks, months, years – and it’s a lie. There’s always another. When do you know if something is real or just depression talking?

What’s the answer? Is there a solution? SATURDAY

I’m hoping so. I’m hoping it is to focus on all the little good pieces:

the last message from the online pharmacy was that they had approved my prior authorization – without any further calls from me to them OR the doctor’s office; they may even manage to send me my perfectly legal, non-narcotic, non-opiate pain pills without me having to chase them down, and possibly even repeat that twice more in 3 and  months. Meanwhile, I pray the generics figure it out.

I am much further along in the estate-settling – and can’t do anything further this weekend; I hope I have figured out the way that doesn’t require exorbitant taxes.

I think that ‘we have to get out of this place’ has finally penetrated – we’re both quite tired of the continuing stream of maintenance, and the computations are almost done; a trip to California may be in the offing (let’s hope I survive!).

I may have located the cause of a couple of physical problems – that would be a lovely set of things to remove from my life.

And my standby solution – rest and reset the brain – still seems to work. Happy weekend – I’m going to go use it now.

And maybe one of these days I’ll learn to advertise…

One for my side: Google confirms I can spell pretidigitation and know what it means!

How’s your weekend going?

And thanks again to Stencil for the ability to make images out of thin air.

Writers have only so many hours

Desktop with coffee and office supplies. Text: The longer the to do list, the less efficiently I handle it. Alicia Butcher Ehrhardt


I mourn the loss of reading material online, which is hypocritical of me, as I’m also NOT producing any of it myself on a regular basis. Blog post reading material, that is.

With me, having two main tasks on the plate is a stretch. Right now I have several – and the blogging has suffered.

I apologize for the self-centered post to follow, but it may explain the hiatus a bit.

The A1 task has become ‘finding a place to live.’

I am vetting Continuing Care Retirement Communities (CCRCs) in California, with a few in NJ and PA for comparison.

I had hoped we’d be out of here by now, resting after our labors in a new community, preferably in California (land of better weather and my birth), with the time-consuming search behind us, and nothing more challenging, apart from my fiction, than using the new pool and gym and having dinner with other compatible residents.

The problem: it is a ‘forever home,’ and will require quite a lot of our money over the coming years, and, even though we could change once we got there if we didn’t like the one we picked, we’d be older, possibly frailer, and it would be a physical and financial challenge.

So, pick well – and give the community the rest of your life.

So, picking well is crucial. And hard.

The A2 task has become ‘get rid of this house.’

The reason we’re moving, and not aging in place, is that THIS house and yard and my lovely perennial garden consumes way too much of our energy, and our social life is diminishing to the vanishing point as OTHER people leave. And the common-in-this-day: our children do not live near us or each other, and that won’t change.

My mother, in Mexico City, is lovingly taken care of by a rotating staff of three aides – supervised by my whole family. I can’t expect that – no extended family here. I hope we get the kids to supervise when we’re older, but it will be remotely most of the time. We had our children very late as we established OUR careers, and they are barely getting started in many ways – one of the unforseen consequences of me listening to all the people who said you could wait. Plus I never expected to be sick. 28 years this November.

We are being responsible with time, money, and our wishes, and setting ourselves up now, BEFORE the crisis that usually precipitates moving (often then into Assisted Living or a Nursing Home) for older adults.

We also plan to enjoy the freer lifestyle – there is no point to having a suburban house unless you have a lot of family or friends there frequently. One of my ambitions is the ability to travel – because the grass is not our problem, nor the drains, nor freezing pipes… You get the picture.

Many of my generation are starting to see the benefits, and doing the same thing: move while you can enjoy the Independent Living part of the new place, be already situated in a place you chose when you need more care.

So: DEJUNK the place, fix it up, sell it – find new place, move in, fix it up a bit. Unfortunately, for someone like me, this is the same as a To Do list item: climb Everest.

The A3 task is: finish my dad’s last tax return

And do Mother’s for the last couple of years.

I finally got one step further on this task.

A bit of background: as the only child in the States, it has always been my duty to take care of such things as my parents needed. They were both American, and lived in Mexico. And my Daddy was, if not secretive, definitely of the older generation, which kept things close to their chests – especially finances – because it was nobody’s business but theirs. Daddy always paid whatever taxes he owed to the USA as an expat. He was a WWII veteran, and an honest man. I miss him a lot. I don’t get there to see Mother nearly enough – and it is a hugely exhausting trip for me.

That wasn’t a problem, but the orderly transition of information was never made, and a bunch of things had to be regenerated or reconstructed after Daddy died, and the IRS made this rather difficult because there were pieces I had to justify acquiring.

Needless to go into detail, but I now have the information I need to file those tax returns, which means that job goes to the head of the queue, as it has been several years. It wasn’t CRITICAL, because there will be no taxes OWED (fines are based on unpaid taxes), but I really don’t want to have to carry that paperwork with me as we move, and risk both losing it, and having the whole filing be postponed MUCH longer.

The A4 task is: writing Pride’s Children: NETHERWORLD (formerly A1).

This is the real reason for fewer posts: the writing is happening when I have the brain and the energy, and I’m much farther along than before. Book over blog posts.

On bad days, if I can write at all, the text seems leaden and ungraceful, but I plow ahead, and have been pleasantly surprised to find that the graceless prose requires far less work to bring it up to my standards than I expected: being tired and low while writing doesn’t get in the way of the fact that the PROCESS I use is solid.

Though, as I stated in a comment recently on FB, no one in their right mind would use my process.

But it WORKS for me, still allows me to put together this vast story by creating tiny individual mosaic tiles to cement into the solid overall framework with some tweaking but no loss. I marvel at this. It’s taken twenty years+ of writing to get to this point, of knowing exactly what to do (except for the art part – that comes from no conscious process I can see or summon): gather everything I have decided must go in a scene, and the process plus subconscious turns it into a short story.

Because that’s how I see every scene: a short story, as complete in itself as I can make it (without the redundancy of creating the world anew each time).

The A4′ task is: marketing Pride’s Children: PURGATORY (formerly A2).

With only one of me, and so much effort in the marketing department being unfruitful (you have no idea how much time I’ve spent on Amazon ads this year, but it was a huge commitment which hasn’t panned out, but may, one of these days), and that me being so low energy, it is currently stalled.

And likely to be ignored a lot, while at the same time I mourn having no sales or borrow except the occasional one I generate at great effort by hand. I’m mourning a lot of things right now – what’s one more?

But this one is actually a drain on the spirit, even though I hope the publication of more works will be the promised kick to sales of Book 1. This is practically an indie promise: write more books, and you will do better.

Which begs entirely the question: nothing will happen without marketing, and marketing two or three is more work.

The rest of the list: singing, a bit of socializing, life.

Less of all that every day – my folk group singing is yielding to the reality that I’ve been in this group for years, if not decades, and every single one of us is that much older – and now finding it hard to drive at night. In its current form, its days are numbered. We’re singing along, waiting for the old dear to have one of those crises I wrote about above.

I thought I had lost my choir singing on Sundays; after the stents, the meds gave me anxiety and panic attacks of major proportions, and I’ve written about the Post-Traumatic Stress created, but most of that seems under control since I am NOT on the meds (and I’m doing my cardiac rehab in the basement, thanks for asking, three times a week). I’m actually better at climbing the stairs to the crypt of the Princeton chapel where we practice (NOTE: shortness of breath IS a sign of possible artery blockage – you aren’t getting enough oxygen!). Now I’m worried about the voice part, which I always knew would happen some day, but it may get a bit better, at least until we leave, if the STRESS level drops. Singing is largely breath support, and stress makes that harder.

And the socializing, when it happens, really wipes me out – but is psychologically necessary. I look forward to it being less stressful in the CCRC, or why move? And I will be missing all my friends, which won’t help. I’ve asked to go to the annual folk-singing picnic by Skype.

That’s the update.

There sure has been a lot of adrenaline – which I handle badly – attached to these events and their outcomes, and the ability to cope, which involves being able to really rest for at least a half hour out of every three, has been severely compromised (and I have no idea how it will go when we visit 5-8 CCRCs in California in the 10-day or so trip I still have to plan).

But I am hopeful.

And I am WRITING many more days than not.

And I am making PROGRESS on NETHERWORLD, which is REALLY the A1.

Peace to all of you. How are you?

For your trouble, here is an epigraph from Chapter 22:

The heart does not rest
For at battle with itself
It can never win.

Tahiro Mizuki,
trans. by R. Heath

My appreciation, again, to Stencil for allowing me to produce the graphics which head many of my posts.










Structure and me we’re old buddies


Doing my visits to my favorite blogs, I ran into a new post on Maverick Writer (recommended because has such novel ways of looking at writing) about a writer for whom the hallowed three-act structure, re-examined, provided new insight.

Catana writes in a number of fantasy sub-genres, and we’ve had some interesting conversations about many topics, but I didn’t realize until this post that she’s a dyed-in-the-wool pantser (at least I think she is, from the posts and her comments).

I always find it fascinating when someone tackles long-held beliefs and finds something usable in the opposite to what they’ve assumed, whether they change or just incorporate some of the ideas, because writers, especially older writers like me, NEED to do that and remain flexible and open to ideas.

I, myself, can pants for as long as maybe ten or twenty pages (which need revision). I have to work hard sometimes to bring my own posts into some kind of logical format before I send them out into the void, some days more successfully unified than on others.

Structure is how I manage to write

For me, with the brain fog and the CFS, who can’t remember from one day to the next sometimes what she had for breakfast, structure is critical.

I don’t have to create a soaring 150 floor building all at once – I can set up the structure, and decorate one apartment at a time. On bad days, I can decorate one room in the apartment. And on really bad days, I can paint the cabinet door in one room.

I’m very aware other writers can hold their entire book in their head. I might have been able to do that now had I not gotten sick, but that ship has sailed (I routinely carried an awful lot of subroutines in my head when I programmed, and their connections, so it’s not too farfetched).

But I can’t. And, to tell the truth, it’s an awful lot of stuff to carry around.

The three-act structure, revisited

She’s giving it a chance. I hope she finds some useful pieces, as the desired result is always a story that hangs together.

I was going to comment, and it got too long, so:

As for me, extreme plotter that I am

I live and breathe structure, because it FREES me from the plot after I set it up. Then I can concentrate on characters, and themes, and just the right amount of scenery, and language…

Today I was working on a scene which is pivotal to Book 2, even more than many. I started from scratch – the old rough draft is hilarious. But I knew why this scene needed to be here, and what would happen if it were not (the story comes to an abrupt halt). I knew who was probably in the scene – and it didn’t change the structure to make a few small changes there. The scene had no preferred physical location, as long as its aim was accomplished (and it is in Uttar Pradesh, India), so I had the fun of brainstorming – and came up with something I never would have thought of before that I think will give it a great punch.

When I got to my question on foreshadowing (every scene gets asked that question), I saw oooh! a perfect opportunity. In it went – because I know the foreshadowed event will be happening, and this will make it not seem to come out of nowhere. Moving an interaction from a later scene into this one – because the structure allows it – lets me add some conflict which actually affects the aim in a usable way.


Getting the whole to hang together

Otherwise, each one of the ideas that come to me while writing could be a dead end, and waste hours and pages, and mire me in mud.

I hate throwing away usable words, because I work hard now while writing the words to make them be good from the beginning. I toss lots of stuff – but compare it to the structure as I decide to toss (or move it elsewhere – after all, my brain gave me those words for a reason).

I think this one will be fine with around two beats, and the material is starting to organize itself into two piles that ‘go together’. Beats are my in-scene structure. Each scene needs a first and last line – which connect the scene to the chapter and the book. Within the scene I need (as per The Fire in Fiction) an outer and an inner turning point so the scene is coherent as a whole.

Anyway (nobody ever asks about structure, and you didn’t really ask, but I love it), when I start tomorrow, I will have all the sequins – and the costume cut out, and the assembly may take as little as a day (assuming my brain is on). Works for me.

Like making a collage: first I gather substrate and pieces, then I affix them where they please me, then I hang it where I always intended to.

Reader or writer, what is your gut feeling about books that do – and don’t have structure?

Stencil gets my thanks for making easy graphics possible. Give them a visit.

Check out PC’s reviews on Amazon – just got a sparkly new one!


Writing in a niche market is fraught


When feedback is rare, because, as an author, you haven’t ‘taken off’ yet, the individual pieces that come your way can carry far more power than you expect. And do more damage, or, in my case, make you a lot more stubborn.

What is the niche? INDIE NON-GENRE fiction

Classified – or should be – as General Fiction, ‘literary’ only if the quality is up to the standards of readers who specifically choose to read literary fiction (and omnivores).

That quality is subjective, to some extent. There are so many ways for a novel to fail, from poor characterization to too much characterization, from implausible plot to none at all, and from the habit of stopping the story for minute description of details to an overreliance on flowery language.

I amused myself for a while reading the negative reviews of popular literary fiction, until I realized that the authors were doing quite well – and their fans often didn’t bother to leave feedback (how many ways can you say ‘I liked this book’?), but their detractors did, so the ratings tended to be skewed.

These authors long ago learned to ignore the critics, write the next book, and feel confident it would be bought in reasonable numbers.

I have not. Yet.

Stubborn I have been since a small child

I was the kind of ugly duckling people hesitate to pick on. Unkindnesses were not uncommon, but outright bullying requires the consent of the bullied – or their physical inability to resist – to work properly, and that was not me.

I had a family to back me up (“our ugly duckling, right or wrong”), who loved me and still do (thanks, guys!). I didn’t have any of the easy pickings, gayness or excessive weight (though I was on the stocky side) or scandals in the family or dimness. It wasn’t much fun to pick on me, if I even noticed it, so I was mostly left to my own devices.

And I didn’t CARE about other people’s opinions (except my parents’). We felt we had the best possible parents compared to all our friends, so it was a serious failing not to be up to their standards, and we tried very hard

Why mention this unlovely trait? Because it affects not my writing directly (I’ve pretty much settled into a voice and style, at least for this set of books), but my mood.

Making my mood conscious, and then removing it if inconvenient, takes up some of my daily time. Sometimes the process results in reflection, and you get a post.

I’m trying to improve both sales and reviews/ratings

The plan was to have Pride’s Children: PURGATORY selling quietly at some rate in the background, with borrows from Kindle Unlimited a separate small stream of income, justifying the writing.

I tell myself that writing is a business, not a hobby. One may become a talented amateur painter, for example, but no hobbyist-painter spends every possible moment painting.

The difference is both the intention – and the time and effort put into the endeavor.

Which has led to me spending time looking at the means for promotion available to those pesky self-publishing indies.

That’s where the niche part comes in.

If you write, say, Science Fiction or Category Romance, you have a lot of company (writers) and a defined (and large) audience of potential readers. Within these genres, there is a sense of camaraderie, and a sharing – on the indie side – of information about which means of promotion work, and how to go about them.

What works for INDIE GENRE promotion?

I am well read on the methods – indie writers are very generous with information.

Nothing is a slam dunk, of course – people who think you just throw a book together, repeat at three-month intervals, set the first book to permafree or 0.99 and pay off your mortgage, find the field harder to plow than they expected. There is work, and savvy, and exploiting the available avenues, and marketing, and spending your money wisely on ads and promotions.

But a new indie writer – or one tiring of the traditional dance and swallowing her distaste and trying self-publishing (usually because traditional publishing has huge problems for genre writers, including skimpy advances (if you get one at all) and very low royalties) – finds many ideas to try.

Follow the methods. Write your books. LEARN. Cross-promote. And if you’re energetic and confident and prolific – and can write worth a damn, especially within genre conventions – you can make a career.

Stealing fire from the indie gods

I’ve been reading all this since I started reading the self-publishing blogs in 2012, and educating myself to the business side of writing.

And every thing I read was cause for reflection – and me looking for the other side to the idea, the one that might work for me. Because I knew, from the very beginning, I was different.

I doubt traditional publishers would take a chance – that pesky heroine, and some of those ideas – not at all ‘more of the same.’

And I also knew that ‘prolific, ‘energetic,’ and ‘genre conventions’ were not going to work for me.

I have been welcomed in many places, even as I bring in my weird differences, simply because most indies are welcoming people. Their success doesn’t depend on keeping me out of a traditional publisher’s catalog slot. We are competitors in only a very general sense.

The one I am trying now has to do with Amazon ads; I’ve joined a FaceBook group whose purpose is to learn how to master Amazon ads in two ways:

making you comfortable with advertising on Amazon – and teaching you how to create the ads, and

fine-tuning the ads to find a comfortable rate of return for your advertising dollar.

The people I share this group with are mostly indie (a few hybrid authors do traditional + self-publishing). And most of them are very firmly genre writers: thrillers and cozy mysteries, paranormal Romance and Christian Romance, SF and fantasy.

I haven’t found many ‘literary’ or mainstream or general fiction authors identifying themselves as such. So I’ve been mostly alone in my plan to see what I can adapt from genre techniques of marketing, reading every post with the intention of turning it on its head if that would help ME.


I have a very specific set of techniques in my plan.

It may not be doable.

It may be doable, but so expensive that it’s not worth it.

I won’t share unless it works, because the techniques are also very frangible and friable and delicate. I can see them working – and then not working if even a relatively small group people decide to try to follow suit.

What I’m NOT happy with

This is the hard part, and I’ll illustrate it with two bits of feedback I received in the past two days:


Readers’ Comments
‘Interesting in many ways. The characters have considerable
depth and the plot is interesting. It could do with a good
editor in parts to ‘cut it down’ a little. Also, parts of it
are difficult to follow. I had to re-read the first chapter to
understand all of it. But, if you are prepared to work, you
will find here a fascinating story populated with strong
characters. Just a note, the cover’s a bit flat.’ Male reader,
aged 42
‘Powerful characters – yes. Interesting plot with plenty of
twists – yes. Well described setting – yes. Very complicated
and a hard-to-follow writing style – yes. This probably needs
an editor with a red pen to cut it. If that happened, it would
be a top-notch EPIC!’ Female reader, aged 56

‘A bit too ‘wordy’ for me. If you read it, have a dictionary
handy. I’m guessing this was a huge job to write. And for
this, I congratulate the author. Her knowledge of her settings
and characters is stunning, and the illness of the author is
well-handled and adds a further element of interest. I enjoyed
it, though it was a rather exhausting read.’ Female reader,
aged 59

‘The stream of consciousness is interesting but killed the
book for me. It just over complicated the story and made it
difficult to follow. Personally, I would encourage the author
to cut the length of this story considerably. The characters
are interesting and well-handled, the plot is powerful with an
excellent ending. It just needs editing a little.’ Indie
Publisher, aged 51

I.e., Change your writing – it’s too long and too hard for me.


Thank God for positive!

I have long finished your book and loved it. Loved it loved it loved it. It was entirely to my taste. “The Essex Serpent” had this kind of pacing as well, and I found myself absorbed in the balance between internal monologues and external events. I ended the book wanting to know what happens to Kary, Andrew and Bianca next.

I.e., I like it the way it is and want more.

Why point out only some people like it?

Because when you write to a niche, but there is a much larger pool of readers who won’t like what you write, or won’t quite ‘get it,’ you have to be very careful NOT to attract those other readers – who will then leave the exact kind of reviews you don’t want to be associated with, lower your rating, and attempt, in their kindness, to ‘fix’ you and your writing.

And when the readers you DO want to attract by your ads are firmly convinced that no indie author can write the right kind of novels, because if they could, these writers would go through the traditional gatekeepers and be blessed and vetted, the least thing can scare those readers off from even trying to read your book.

Ergo, fraught. Writing in such a niche. And even more fraught, is trying to find a way to do it indie anyway, including advertising. And still find readers.

The topic is esoteric to the point of madness

For which I apologize.

But I had to find SOMETHING to do with the feedback which showed up in my inbox, and with the well-intentioned comments (change your price, get a professional to edit your work, get a professional to design your cover, make it shorter, CHANGE your book) which has been my fare lately.

So I share it with my friends.

You’re already used to me.

How to pick a forever home


I’m in the middle of a huge search.

For a while now I have been staring the rest of my life, so to speak, in the face.

It has become – even before the events earlier this year which resulted in three stents – very obvious that living in a 4-bedroom, 2.5-bath NJ suburban home was becoming untenable.

Like the older pet which needs to be rehomed so it can live out its remaining days in relative peace, I can’t handle the little I used to be able to handle of my life – without some major changes.


When you have no choices to make, you live the best you can, going along from one step to the next as well as you’re able. Your choices are dictated by the moment, by an illness, by something external you have no control over.

To a large extent, this depends on prior choices – did you take care of yourself physically? And did that work for you? Did you put some money into savings – assuming there was some to spare? Have you invested in a house which can be sold now? Are you able to move if that’s the best choice, or does something anchor you in place?

If you are poor, your choices are limited all the way along life.

If your health is not good, your choices are extremely limited. I’ve dealt with that one myself for 27+ years, with no end in sight; any change in that part of my life will be created, within the disease of CFS by me, and without, by some unknown researcher some day. Even if a cause and treatment are found, or a treatment only, there is no guarantee that it will reverse the damage I live with. Me managing like crazy, just to stay on a slowly-declining plane, is already doing the best that I can.

If life is unkind, you are already stuck, but there may be a possibility of becoming unstuck some day.

Facing the facts in time

Many people wait too long to make the decision where to go, what to do – and end up making that decision by accident, when a life crisis comes along.

Friends of my parents gave me a model. I didn’t understand it at the time, since they were living in a fair amount of material comfort in Guadalajara, but they went and bought into a community in, I believe, El Paso, TX. J at least was an American citizen, and one or both of them would probably have had Medicare by that age, and possibly they wanted to be in a place with access to American hospitals and healthcare. I know none of the details, but it seemed odd at the time (my own parents didn’t do the same, due to large extended family in Mexico City, and more limited funds) because of their family in Guadalajara, but now I see they were making a decision for a whole bunch of things while they were still capable and competent to make those decisions.

It has stuck with me, even though it has taken until the last couple of years for me to see the why.

I began four or five years ago to seriously consider the future. The kids were not all launched, but that time was coming closer.

I remember pointing out the advantages to a planned change – rather than a chaotic one induced by circumstances – to a colleague in a support group who was older, and whose wife was older, as well as to family.

No one listened; and the colleague’s wife now has advancing dementia – making it very difficult for him to move, for her to adjust to somewhere new, and for her to help in the decision and the move. Family has reached a different solution, and it was as a response to crises, just as I predicted, crises that might have been avoided.

The stories are everywhere: people whose parents refused to ‘be put in a home’ until a major illness or crisis caused a non-optimal solution to be hastily implemented. People who didn’t move until one of a couple faced significant health problems, at which point it was too late to enjoy the move.

We are fortunate to have options

Which is almost funny, since the story of my life lately is that I’m completely out of options.

I preach the necessity of disability insurance, if it is at all possible (and recommend you pay for it yourself – which has huge tax advantages if you need it), because you are five times more likely to become disabled during your working years than to die – and everyone has life insurance, but most don’t have disability insurance. Private disability insurance goes beyond SS disability (which is downright stingy): it kept us middle class when I became unable to work.

Consider also the possibility of a disability lasting long enough that you really need some built-in inflation protection. I had none, and it really hurt.

I would have been able to save more money had I worked. I prefer working – keeping myself sane these many years has not been easy.

So, facing the decision of what to do with the rest of our life is happening with me still sick, but with some retirement accounts and a house which can be sold.

The parameters to the decision

I am fortunate to have a living spouse in reasonably good health – right now. In fact, I would like to preserve that health: when he goes out to clear the snow or mow the grass on a hot humid day or prune bushes standing on a platform, I worry. I used to help with the snow – can’t do that any more (but he FINALLY bought a snowplow). I used to do a fair amount of the weeding – can’t do that any more, because sitting on the ground or a low chair or bending over cause significant pain over the next couple of days, and that heat and humidity are probably what landed me in the hospital this last time.

So he’s doing ALL the work, and even with some help from an assistant, he’s still IN CHARGE of all the work. We had people last year; they were ultimately unsatisfactory.

Taking care of house and yard consumes too much of his energy, all of mine, and just has to be done again. That doesn’t even take into account ‘things that go wrong,’ such as the roof or the AC or the driveway or the trees that die.

So, the obvious is a place where we do none of the maintenance work, in or out.

Another stressor has been how hard it is to leave the house to go somewhere for a vacation, added to how long it takes us to pack – and leave the house so someone else can do the bare minimum. Homeownership had its joys when we did everything ourselves (BC – before children); then it became just work while the kids were home and things got done when they had to be done, in among all the other chores; now it’s impossible.

Pet care – you’d never believe how hard it is to take care of one tiny chinchilla, and how difficult to arrange for someone to keep her alive while we’re gone. Impossible without an assistant (thank goodness I have one now for a few hours every week), still tricky even with someone who potentially can drop by every couple of days to make sure Gizzy has food and water and the AC hasn’t died (if it gets too hot, she won’t make it – that thick silky fur coat). Already seriously considering finding her another home (anyone want a slightly spoiled chinchilla?), and am making sure anywhere we consider allows pets in case she goes with us.

These will be the best years we have left

Seems obvious, but we’re not getting any younger.

I want a place where I can make the big push for 1) getting as much exercise as the CFS will allow, 2) making the best use of any improvements in walking ability, 3) hoping that reduced stress will contributed to better overall health and mobility.

This means I need a year-round pool and gym, and PT people on-site, somewhere I can actually get to without spending a day of my energy.

And we need bike paths. Even though I can’t go far, not being able to walk doesn’t mean I can’t ride a bike! My limitation is actually the energy – I can go short rides, hope to be able to increase those a bit.

And I want good weather: in NJ, if you miss a ‘good day,’ there may not be another for a while. I grew up in Southern California and Mexico City, where weather was a stable thing, and the next day would be much like today, and both would be pleasant. Then, going out to do something will be governed by whether I have the energy today, not by whether it’s feasible!

I require a heated year-round pool. No quarter given on this one: I’m a water baby, even if I’m not actually swimming, and I’m not moving somewhere for the rest of my life that doesn’t have a pool. Not happening.

I tell the spouse that the next 5-10 years of our lives are the good ones – and if we are to do ANY traveling, it will be now. I want to see my mother and my extended family in Mexico, possibly at family reunions in Michigan. I want to go to the beach in the Riviera Maya or in places like Acapulco and Huatulco, which have warm ocean water in the winter. Because I know I can do these – at my extremely slow pace (once I cope with a week of packing and survive the week when we come back). I want to spend time doing a vacation with the kids while it still is fun for most of the family.

The solution? I’m working my tail off to find it

California has, at last count, 102 CCRCs (Continuing Care Retirement Communities) – places we can move to and get all those things above.

Some of them are unsuitable because they are retirement communities for particular religious groups we don’t belong to; others are urban and have no pool; still others are way too expensive for us (I’ve eliminated all the for-profits). Some would make it difficult for me to get to the gym or pool – my time being coherent is also limited, and the more energy I expend in getting, the less time I have for the activity; the independent cottages, ‘just a short walk away,’ seem, by definition, to require more health to get to the pool or gym – I believe an apartment in the same building as the facilities is my best option.

The CCRC concept is doing well. It is recommended you stick with places over 90% occupancy (proof of continuing fiscal responsibility), but when a place is 98% full, by definition there are few units left! People move on to assisted living or nursing home care (a CCRC by definition has both available to its residents when they need the next step), and some pass on, but the rates are not high, and I’d like to move fairly soon (once the pesky house is dejunked and sold).

It is a lot of research work and no one can do it for you. Not really. I have spent hours talking to nice sales and marketing people – only to hang up and realize there is no way we can afford their lovely CCRC. The main reason: they don’t put their prices on their websites (probably because then people won’t call and talk to the nice salespeople), but it is inefficient and wearying when you really do know how much you can afford and what you need, which most people on this search don’t yet. A tendency to put information such as ‘apartments start at…’ out for view means people think they might be able to swing it – and then can’t when the range of prices becomes known.

Don’t cry for me, Argentina

I’ll figure it out. We’ll pick 5-8 of these places, and then take ‘the trip’: stay in a few, see the physical plant, smell the nursing home portion (apparently, that’s the biggie – clean places take work and money), and have lunch with some residents in assisted living to see how they are really living – and being treated.

Then we will make a decision, hope the house-selling sill support that decision, and spend an enormous amount of my good time – and all of husband’s – actually doing this.

The average age of entrance used to be 80; it’s already dropping as people realize they can’t live worry-free if they have a house on their hands. Even with a lot of money and a lot of help, it’s a constant set of chores.

Think about this sooner, rather than later, if this kind of solution to our common problem appeals to you. Time goes by much faster than you expect.

Wish us luck (even if you would never consider leaving your home, or living with a bunch of strangers horrifies you).



Walking around in fear is stressful


I’m walking around fearing sudden death, sudden incapacitation, and the need for more time-sucking procedures/tests/doctor visits/hospitals…

It’s too stressful to LIVE THIS WAY.

But after a certain number of life hits on the head with a 2 x 4, there comes a state close to ‘learned helplessness,’ where, if you’re not careful, you LET the stress have free rein – and, while you can’t change reality (whatever that is for you), you have forgotten that you CAN change your attitude.

It never stops, the stress from life

In addition to the medical stuff, which came unbidden and must be dealt with, willy nilly, I now have some dental stuff – and what the dentist thinks is necessary to do.

And I’ve accepted the job of ‘person who locates and chooses our permanent abode.’

Permanent, as in ‘where we – husband and I – will live the rest of our lives.’

The permanent solution to life

We are looking at the particular model of a Continuing Care Retirement Community (CCRC) for a bunch of reasons, the main one being that we want to spare our children (none of whom live close to us now) the ‘problem of mom and dad’ – basically, what to do with us when we’re no longer competent to manage our own affairs, and they have to step in and make decisions FOR us.

We have seen, first hand, how our parents dealt with this.

First hand – and at a distance.

And it is an interesting general problem which we’ve now seen proceed four different ways!

In Mexico City, my four lovely younger sisters have done the ‘huge extended family takes care of mom and dad’ – and are continuing to date with Mother. Done with love, it has still taken a huge amount of resources, and I have been in no position to help with much – I barely manage to visit every couple of years, and do the tiny bit of US paperwork (still incomplete) because my parents are both US citizens.

In the States, my lovely sister-in-law, who has always lived much closer to my in-laws, has undertaken the huge and complete burden much of the time, shepherding her parents as they wished and she could, and pushing for more permanent solutions when they had to be undertaken. By herself, with occasional help from her brother – as she requested it – she is still supervising all the care for my FIL.

We will have no child close, geographically, unless we move close to one of ours (and that child doesn’t move following professional opportunities, the thing that took them far away in the first place). We have no extended family in the States.

And I, with my disabilities, could provide little help to them, even if I lived close.

Making our own choices requires an enormous amount of work NOW

Evaluating places to move to, figuring out finances (husband is doing most of this part), comparing the amenities – and the long-term healthcare options – at each place has become my additional task, added to trying to write, learning to advertise – and the energy-sucking cardiac rehab exercise.

The additional task that comes when you decide you no longer want to be in charge of a suburban NJ house is selling it. Which require getting it ready for market. Which in turn requires fixing a number of ‘little’ things which, while they don’t affect the quality of living in a house all that much (such as a bump on the driveway from a tree root), WILL affect either the salability or the eventual sales price.

And the final task: dejunking a house we moved into in 1981 and reared three children in (and homeschooled them in).

Even with an assistant – whose time has been mainly spent lately helping the Master with the annual gardening tasks, not me with the dejunking – the decisions are mostly mine. And I don’t make decisions easily (that brain fog thing you have with CFS) or quickly, even with help.

There are twin mottos to keep me going: ‘If it doesn’t give you joy, out it goes,’ and ‘If it won’t fit in a two-bedroom smaller apartment, out it goes.’

Even then it is hard to make the decisions, and they must come out of my tiny daily supply of ‘good time’ – which is also my WRITING time.

Compartmentalization – and all the other tricks

The stress accumulates. I notice. I poke holes in it, take the time to do my de-stressing yoga-type breathing. Repeat.

Because there IS too much stress right now, even if the ultimate goal is much less stress.

To Do lists. Using a Scrivener Project for each of the tasks.

Doing the required things – I will not give up the cardiac rehab exercises, even if they are not yet providing anything much in the way of extra energy.

And letting go of the guilt, including the guilt that pops its head up because I can’t contribute what I should have been able to contribute to this household, had I not gotten sick all those years ago. A hardy perennial, that guilt.

And the guilt of actually spending that money we have carefully been not spending all these years, so we could take care of our needs in retirement.

And, almost daily, talking myself down from the ledge of ‘Woe is me!’

Writing suffers when the writer is stressed – normal

Blog posts have suffered, and will continue to, but, ironically, I need this outlet – because it de-stresses me to pin all this stuff to the ground in its little cages, where I let one problem child out at a time, on my better days.

The writing happens most days – though not as long. I have learned to accept that pinning something down on a timeline I haven’t looked at in two years WILL take that day’s energy – and is a GOOD use of that day’s writing time – because it MUST be done.

Most of these are from things I probably should have figured out long ago, but 15 years writing the first novel was already long enough!

I think there aren’t too many left, but have just dealt with a doozy.

And am very pleased with myself because it DID work out – and locked in, again, that odd feeling I have sometimes that I am a chronicler of an actual story. Good if you’re writing mainstream fiction with a long timeline, many characters (64 NAMED characters as of the last time I counted), covering locations in several different countries and states.

My solution to stress always includes writing it out

That’s how I make sense of the world, take the circling thoughts out of my head and acknowledge and record them, and eventually find ways to deal with them.

It is also part of my usual process to… I don’t want to say ‘cheer myself up,’ because that somehow implies putting a false face of happiness on top of the real problems. To talk back, to the stress, to the situational depression, to my feelings of inadequacy, to the long list of things I SHOULD have done and SHOULD be doing which get ignored.

Basically, the MORE dysfunctional I become, or allow myself to become before I notice that it’s gotten me again, the LESS I can do to change anything that’s causing the dysfunction, and so I have to get out of that state. And I’ve already proved – by trying – that I cannot accept chemical help and still get anything done.

So it’s my own resources, the written process after the thinking, and continuing to chip away at everything as long as God give me life and any ability to do.

And it’s a good time to prioritize (which I’m not doing as well as I need to).

MY motto is: “I’m working on it!”

Thought you’d like to know – and me to record – what ‘it’ is right now.

I’m working on it. You?








‘Revenue-enhancing’ has become a dirty word


Even if you have insurance!

It didn’t used to be like this, and I’m sure they have plenty of good reasons, probably having to do with nitpicking by insurance companies, but I’m getting really tired of getting lied to, and having to be on my guard all the time for every little thing when I go to the office of some medical professionals.

I don’t want to name names, as I suspect it’s widespread, but I’m finding that I can’t get out of a medical/dental office without little enhancements  to the experience being offered as if they were included, or as ‘covered by insurance, so don’t worry about the cost,’ and when I check turn out to be covered – yes, but at 50%. Or with a ‘credit toward’ some expense which is entirely optional.

Or in the case of one practitioner, when he informed us that our insurance allowed us the reduced cost which had been negotiated by the insurance company – they didn’t actually pay him anything! I felt cheapened by the experience (which was expensive), and wondered whether I was supposed to be offering him his full price!

The lists of what isn’t covered can depend on whether someone entirely separate from you has called this (whatever it is) by one name or a different name, such as people being warned lately that a hospital admission (going in and staying over night) is not necessarily a ‘hospital admission,’ covered by insurance!

It wouldn’t be my problem, except that these little untruths are destined to cost ME big money, if not just time and effort. And hours on the phone to attempt to straighten out with person after person on the phone in ‘billing.’

Is it necessary – and if so, why isn’t it covered?

I depend on my insurance company to, in some sense, control the costs of medical procedures, which, having written this, may be the problem.

But I can’t change the contract negotiated between whoever is paying for the medical insurance and whoever is paying the providers of medical services by one iota.

I don’t expect to hear, from an insurance company, “doctors recommend this as completely necessary, but we won’t pay for it.”

Also, I don’t actually hear from a provider, “this is absolutely recommended, but insurance won’t pay for it.”

Instead, I will turn up at an appointment for a covered service, and find I have to see the billing person first, because I have a HUGE ‘copay.’ At which point my choices are to leave, or to pay for a bill I wasn’t expecting. For a service the doctor says is entirely optional – but necessary.

The result? Constant vigilance is required.

And I can’t go to one of these visits and deal with something that pops up on the spot (there is a small additional charge for X because insurance doesn’t cover it) – done in such a way that you are a cheapskate if you don’t get the extra candy-flavored teeth protection for your growing offspring.

Or you have to respond to the eye doctor’s in-house glasses representative that yes, you know the frames available at Retailer-X are cheap – and that you don’t care.

You can’t get home, as I did today, and find out that the service you received as ‘it’s time for your X-rays’ is only covered by your insurer every 60 months. And you didn’t ask, because you assumed that was their job.

Am I exaggerating?

I think not. This has happened in at least five different places and kinds of medical services in the past six months.

And even the blood tests are done by a place which hands you a form that says ‘Medicare may not pay for these services’ and requires that you sign that YOU will pay for them if Medicare rejects something – the doctor ordered!

Every time you decide you’re not going to take the risk, you end up spending gobs MORE time there, and may have to fast all night again if your doctor’s office doesn’t happen to be open that early on the day you went in.

Because, ultimately, the buck stops with you, and this stuff is unbelievably expensive (when billed at full rates), and they will send bill collectors after you.

So it’s important, you have little control, you can prepare for one thing and be bowled over by something else completely without realizing it, and every single thing will cause you stress, time, and energy.

I wonder how the older folk cope?

Has this bitten you?


When there’s been a hole in your writing

Lighthouse at night at end of pier. Text: What can change a writer's voice and style? Alicia Butcher Ehrhardt


The Holy Grail for authors is to be recognized from their writing, because it’s distinctive and personal and memorable. It’s called voice, and goes along with having a style, sometimes for series, sometimes for all your books.

It is an interesting milestone when you find you have developed such features.

And the question I’ve been asking myself since all the garbage happened (starting way back in November of last year) is: Am I still myself as a writer?

Life events change people

And writers are people.

On some of the days I’ve been able to write since the side effects of medications have mostly been out of my system, I have noted with some pleasure that I seem to have learned how to do writing the way I do it – faster.

The process hasn’t changed – I gather a lot of bits my plotting process has decided will be in a particular scene, fill in some lists I have made for myself with such things as ‘What is the heart of this scene?’ and ‘What would happen if this scene weren’t here?’ and such, and start organizing the material into beats which make some kind of sense to me – and then the actual writing seems to flow, dreamlike, from all the little pieces, as they show me where they belong.

Maybe it’s faster because I’ve stopped second-guessing myself: most of the material will fit in, and occasional bits will be postponed, and very rarely a piece will be added to an earlier finished scene.

But I question such gifts.

Is it real?

And is it still me?

I don’t want a reader to notice that something ineffable has changed, and Book 2 feels wrong.

I won’t know the answer to this for a while, but I made a plea to my beta reader to be especially aware of the concept of change as she reads the new material (my method is to send it to her, polished, a chapter at a time).

I’m not sure what the heck I will do it I’ve been changed in my writing by the recent health events. I will accept that maybe the speed has come because I value my tiny bit of functionality even more, now that I’ve experienced how it can disappear completely for months on end.

But first I have to know.

I await her judgment. If she’s not sure, I will get more readers from those who loved PURGATORY, and beg them to look at a couple of chapters.

It’s a scary thought – and one of the things that’s been worrying me along with the obvious aftermath to health problems.

If you notice

anything specific in my NON-fiction – comments and posts and emails – that makes you wonder whether I’m still here, please let me know.

I have literally run to the end of my DIY ways: I can’t tell. And I don’t know why I’m slightly uneasy, unless it’s simply the kind of unease that makes you question EVERYTHING once you trip over something that shouldn’t have been there.

Oh, and: has this ever happened to you?



Writing poised under the Sword of Damocles

Pile of rocks on mountain. Text: What is ready to fall on your head? Alicia Butcher Ehrhardt


There are too many things going on in my life, and all of them critical.

But the thing that is making it hard to write right now is one I hadn’t expected: I can’t remember quite how I felt BS (BEFORE STENTS), when I ONLY had CFS.

And by ‘feel’ in this instance I mean sensations in the BODY.

What sensations am I having that are worrisome?

I’m writing about these because they are both common and keep happening.

I’m doing far more exercise (even in my pitiful little amounts) that I was doing before. Part of it has involved a rowing motion with my arms against a resistance, which uses the chest muscles (pectorals) in an unaccustomed way.

So it isn’t really surprising that these muscles have a spot or two where there is sensation. By which I DON’T necessarily mean pain. Just a tightness that is in the muscle, in places which vary but are repeatable. Over and above the left breast. Outer, center, inner – is what I call them. Once of them seems to be relieved by burping. There are one or two similar spots on the right side – but the right side is dominant, and the muscles may be more used to being used. So, less noticeable?

Are those spots connected to the stents? Or are they simply the same spots on the same muscles – because that doesn’t change. Are they INSIDE the ribcage? Or outside, in the overlying muscles. It’s hard to tell.

There is a slight shortness of breath – when I climb a bunch of steps in a row. Or walk a longer distance than usual unsupported, such as when I walk from the house to the car. Or walk across the lawn to the mailbox and back. The heart rate can go up noticeably – until I sit down and let myself relax. I should expect SOMETHING when I do that – when is it too much?

There are muscles in my upper arms which get a bit weird – sometimes one will make it impossible to sleep because it waits about 6 seconds, and gives me an electric shock – for very long times, until I get up and do some range of motion exercises and some stretches and maybe eat something, and sometimes take ibuprofen (I’m trying to minimize NSAIDs, so I resist).

The question: are these significant?

All of these things could be symptoms. Of clogging arteries. Of something about to happen again. Of something not quite right.

But the thing is that they are not up to the level of being ‘reportable’ – or, heaven forbid, calling the doctor about on a weekend, or going to the ER.

I feel I’m on permanent ‘symptom watch.’ I’m waiting for the symptoms to get worse before doing something, in the same way I should have done something when the shortness of breath happened BS.

They used to drive me crazy in the hospital asking me to rate my pain. For someone who lives with a fair level of constant other pain, it is difficult to choose the higher numbers on the scale, and I’m aware of both minimizing and exaggerating as possibilities.

So, not being able to say ‘this is significant,’ and instead being in ‘wait and watch’ mode continuously is stressful. And stress is bad.

It would help if I could remember which of these were life BS

Standing has been a problem for years, and causes pain. So is my exercise making that worse? Or is something more nefarious going on?

If I walked with the walker BS, I often had pain the next day – I’m supporting part of my body weight with those chest muscles and arms on the walker.

I did as much exercise as I could do prudently before – including a lot of isometrics, which involve clenching a muscle and holding it. I know there were times when I did more than usual, and really noticed it.

And I used to ride the bike, too. The next day I usually felt it.

But I had no reason before to make an accurate record of pains and locations – my modus operandi has always been to ignore most of this stuff as much as possible so as not to waste energy on what I couldn’t change anyway.

PTS anyone? Post-traumatic stress?

It’s one of the major symptoms, being hyperalert, and wondering and worrying about things which may or may not be triggers.

Always being on alert is more than exhausting.

Wondering exactly where on the continuum you’re supposed to do something wears you down. That and wondering if it’s new/real/important. Or ignorable.

So I’m sharing with my blog, and hoping that noticing and documenting feeling physical and mental is enough to disarm them – and that the PTS is slowly going away as I do so.

I really don’t want to have to find someone and take the energy to explain all this stuff to.

Thanks for listening, if you got this far. Share if it resonates.