Category Archives: disability

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!

Status post March 7, 2018



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


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

New Jersey:

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


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


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

Pride’s Children: NETHERWORLD

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


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

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

And how are YOU?

The house where Pride’s Children was written


If God gives me life and brain, I will finish my epic love story, Pride’s Children, in a couple of years.

Sometimes place is important. One thinks of the Brontës writing in the rectory on the moors, and wonders if it was a cold and dismal place, or a warm and cheery one. Did they have one room they kept cozy and tended to congregate in? I could find some of my answers if I took the time to look.

Sometimes I think that Kary’s house, Sanctuary, is more real than my own. I have put more thought into how it should be.

We have lived in this house, only the second one we’ve ever owned, since March 5, 1981, which is a very long time in these moving times. We have been its only owners.

My children have known no other childhood home.

As I have become more home-bound, I have spent almost all my life in the south bedroom, with a window that opens to a quiet court ended by a cul-de-sac, where the kids all rode their tricycles and bicycles and drew in chalk on the pavement.

I insisted on this house – because the neighborhood had – and has – mature trees everywhere I look. With so many developments built on cornfields, and so many owners who don’t bother to plant a tree when they move in, the new developments have a raw look to them.

I dislike the American house which often shows its concrete foundation, stained by water and rust, like a dirty petticoat peeking out from under a lady’s skirt, long after it is built. As if we should all politely ignore all underwear hanging out. Bushes are planted – which never cover that bottom foot of dirty grey.

Ours has bushes to the ground.

Abandoning a home deliberately is something new for me. I love this one in some way, for its memories, but I’m still here, and the memories are all I have. Already. I don’t want to go start clearing the debris of the winter so the bulbs can come out – I’ve done that too many times; now it’s accompanied by the pain of sitting low, and the sleepless nights that come with the pain.

The kids come very rarely, and are not into dance lessons and Scouts any more, so there is nothing for them to do. They often take the train to NY, and spend the day having fun. Without me. One wanders up to Princeton for a good walk and a bunch of Pokemon Go sites. Without me. Or walks to a local park, ditto.

I face the stairs every day. Sometimes I have to go up in an undignified way. I don’t understand why that doesn’t bother other people a whole lot more than it does. If it were them, and me watching, I would have gotten us out of here years ago. No, I have no desire to stay here – with my sewing machine sitting unused in the little attic closet I turned into a sewing room. Because I have no reason to sew. No costume for Halloween, no dress for a prom. My own clothes, which I started making when I was 14, now come in the mail.

I want to make a new home

While I still can. While I can adjust to a new community. While I can meet new people and do new things with enjoyment.

I don’t even want most of our furniture. The dining room table takes a beating when you’re homeschooling three kids at it. Much of the kid furniture was IKEA, assembled on the spot and not really capable of being disassembled successfully. The nice bedroom set, with the light bridge, is too big. The solid oak kitchen table, carefully hand-finished, and in perfect shape, is too big. Somehow or other, over the last two years, it seems every dining room chair needs re-caning and refinishing (I TOLD them not to lean so hard), and the wheels on the kitchen chairs we’ve enjoyed rolling around are destroying both the chairs and the floor.

This house needs a healthy woman in charge. And people who like to do things at the workbench in the basement. I’m not that woman: I did my time.

But somewhere I need to leave a plaque:

In this house, between 2000 and 2018, Pride’s Children was written.

The beginning of it, anyway, because NETHERWORLD won’t be finished here.

There are places I could leave such a plaque, places I know, places behind – where a new owner won’t even know there is a place.

The written record

If you’re a writer, and have a thought – a blog is the perfect home to let it run free. Who knows – some day you may gather your thoughts in words, clean them up and organize them about a theme, and publish them.

I look at this blog, with over five hundred posts since I started in 2012, and I know some of those posts would make a different kind of book on writing, and others would document the production of my own epic – and marvel that the format allows them to still be there when I’ve moved on. I really ought to go see what is there. Might make for some interesting archaeology.

I’m finishing this at six a.m. because the ice dancing at the Olympics put an earworm into my brain, and then I got hungry… You know the drill. It’s a good time for humans to get nostalgic.

How think ye?

Thanks again for Stencil‘s images – consider them if you need a source of them for your own blog. The pictures make me think, and then we’re off on another wandering trail through the writer’s brain.

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.

Does your character make readers uncomfortable?


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

Specifically, your DISABLED character?

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

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

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

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

Disabilities in real life

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

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

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

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

But there is a different way for a writer: reality

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

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

An Amazon reviewer:

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

Disability is a learning experience

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

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

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

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

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


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

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

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

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

It is MUCH harder to market.

I still think it’s worth it.

Do disabled characters make you squirm?

What do disabled writers fear most?


Waiting since June 30, 2014:

You fear getting worse. Because you can. Get worse.

And when writing is a marginal activity already, getting worse can be the snowflake that sets off the avalanche.

When I was young and able – a status not all people who are disabled can claim – I thought I could handle ANYTHING that Life tossed at me.

I was me – I’d figure out a way. Somehow. Eventually. And I always seemed to. I had a brain!

Now that the only way out is death – which is, I hope, still not close – I am facing the trauma of becoming even more disabled, more dependent on other people, less able to care for myself.

Frankly, it scares the hell out of me.

I fear losing even more of my mind. Now, if the planets are aligned, and I have done everything correctly, I get to live in the simulacrum of the mind I used to have – quick-witted and opinionated and so-often right – for at least a little while every day, or to feel it there, right beyond my fingertips if I take that nap, stop leaving the house so many times in a week, get to bed early: it’s there, it hasn’t gone completely, and I had it yesterday, maybe today, perhaps tomorrow.

I have already told my husband to put me in an Alzheimer’s/dementia facility if my mind goes – I don’t want his tender care, watching over me, stuck with that version of me. My mother and my grandmother sank into that hole, and it isn’t pretty – what if I got CFS because I am somehow genetically weak? And have already passed it on to my kids – the older two without knowing, and the third, the girl, after I was sick?

That way lies madness.

We all have SOMETHING wrong with us.

And it’s only going to get WORSE.

The happy seniors hiking in the mountains are in the minority: statistics tell me that if I live to 85 (I planned to live to 115), my chances of dementia are 50%.

On top of this unhappy state of affairs (and I have to my credit only one thing: I’ve never asked Why me, Lord?), I have been dealing, for a number of years, with the inability to walk properly – and here I thought it was ‘ONE disability to a customer.’ And it’s getting worse.

Actually, no – if part of you doesn’t work perfectly, if part of you is ‘disabled’ – it has a tendency to put other parts of you at bigger strain, and to make you more likely to get something else. Plus the statistics are exactly the same for you for anything unrelated to your disability as it is for other people: there’s no reason to think having ‘gotten’ your disability, you can now breathe free: people with one thing can be gifted with another unrelated one just fine (CFS and back problems do not usually go together, though possibly less exercise meant less fitness, which led to more susceptibility to back problems, or earlier, or…).

So why do I write about this potentially depressing subject?

You know the answer: because I’m that weird thing called a writer, and that’s how I get my jollies. No, really, I’m compelled to write down – anything that floats through my head. To get it out of there, of course, out where I can beat it with a stick (if you do that while it’s IN your head, there are problems).

There. I feel a bit better. Thanks. Thought you might like to know.

PS I speak only for myself – THAT I’ve learned. Finally.

PPS Going for that delayed nap I should have taken much earlier, but I couldn’t make the decision to, because, well, I’m over the age of consent and resent like heck that my mind needs frequent naps to work at all. Plus – oh, joy – the sheets finally came out of the dryer, and I always nap better on clean sheets. (Note to self – try to remember that, will you?)

PPPS Relentlessly dragging myself back from the brink.

2018: Still here, still writing.

Stubborn cuss.

And note I finally published in late 2015.

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.

Is the gift worth your LIFE?


I wake up angry too many days.

Then I spend time getting myself at least back to neutral, because I live with other people, and it isn’t fair to them to have to put up with me in that mood, unless I have no other choice, and we already know I have a choice, because I have used that choice successfully every day for many years now: figure out how to, today, and get over yourself.

Every day I berate myself

Because I don’t get to work sooner.

I sit at my computer, and end up checking out whether anything has changed in the world since I forced myself to go to bed last night. Now that we have online subscriptions to the Washington Post and The New York Times, I do a quick flip through the headlined new articles, to see if anything needs my attention.

I remember the comic (xkcd, I believe) about how someone can’t go to bed because the internet is broken.

I know it’s partly physical: for some reason probably related to illness, the brain comes on slowly, and usually doesn’t really focus on anything mentally challenging until after first nap. That baffles me, and scares me, because I have to drag myself into that first nap, too, always convinced before I do so that it won’t help, that if I could just force myself through, block the internet, START working I would now be fine for the rest of the day, and I’d get everything done which never gets done.

Every day I test out my mental speed by doing hard sudokus: under about 6:30 minutes, I can probably do something useful with a small effort; over that, and I can’t usually write, and, worse, make mistakes of epic proportions (luckily Scrivener has snapshots and I do backups erratically but so far successfully). Those scare me – when it takes you a month to write a scene exactly the way you want it, and you think you have deleted it, well, it’s not a pretty feeling.

Nothing helps until somehow

The process starts up by itself, if it’s going to that day.

Many days it doesn’t – and I am helpless to understand why. Because it seems that other, equally stressed days, work.

I laugh when I see people suggest taking days off: it takes me so long to get back to where I was when I’m forced by Life to do something else for a few days that I am pretty sure I won’t make it back to writing ever.

My brain is on instructions to at least try every day, and, indeed, I have no idea what I’d do with a day taken off deliberately from writing.

Back to the ‘gift’ I’m writing about

And that gift IS writing.

Not that I have any choice in the matter, it seems, but the writing, as it is now, is the result of who I’ve become.

And that’s the question: if I had to choose, and I had the Hobson’s choice of writing what I do and being sick, or neither, would I value what I’m writing enough to choose illness if that were its price?

Is one single story – if that’s all I manage – worth a life?

Is LoTR worth Tolkien’s life, GWTW Margaret Mitchell’s? And why classify myself with them (and neither was ill). What about ‘Barbie Takes Manhattan’? Or ‘Bridget Jones’ Diary’? Or ‘Harry the Cat’?

The choice is an illusion

I have children and a husband – they come first.

And, as soon as they don’t need me this instant, I try again to focus.

I took my nap, am more awake (though sudoku still says well over 7 min.), and I come back to the same question: is this worth writing? Is it worth my life? I’m not sure what the answer is, but it certainly is what I want to do with my life, with the energy I get, with the time I spend/waste every day.

I didn’t make this choice – it chose me. Somehow. Like the other gifts in my life, I’ve found myself nose deep in the pool whether I liked it or not.

By standing on tiptoe, I manage not to drown. And then another day comes, and another task, and I find myself, on the good days, inside my head walking Kary and Andrew through an exchange, planning exactly how Bianca will take the next step, knowing what is coming, but not exactly how the words will play out yet.

And wishing I could speed it up.

What did you get for Christmas?

The same old thing.

I don’t want a pony.

But I want this. And if this is the price, yes, bring it on.

Hope you got what you wanted.





I’m sure my real scientific colleagues, the ones with PhDs and MSs and BSs and technician certificates and experience who have been doing science at the CDC before this miserable year, will find appropriate ways to get around Big Brother.

But they shouldn’t have to.

Yes, I know. Some of it is silly jargon, and sometimes overused, and God knows we scientists are nowhere near perfect.

But we CARE about our fellow humans, even the ones who… and we want them to be as happy, and especially healthy, as possible. And make their own adult choices about the number of children they can care for.

This above kind of nonsense wastes time, doesn’t produce anything, and is downright stupid as well as authoritarian and totalitarian and [insert your favorite here].

Meanwhile, it is my civic duty to make sure these words get their regular workout, so they are ready to serve when sanity returns.

Which it must, eventually.

While I’m at it:



and the men and women who drove voters to the polls and got their friends and neighbors to register, and forced their fear down just long enough. Each American gets ONE vote, regardless of income or social standing.

Thank you, Founding Fathers. And those who have added the rest of us to the rolls of voters with the constitutional amendments and Supreme Court decisions.

May Doug Jones serve ALL the people of ALABAMA, who will be better off.

And my usual gratitude to Stencil for the ability to produce images for posts.

Forgive me for yelling.

Making do with everything you’ve got


And I wasn’t even aware of it until I read one of my favorite bloggers, Dave Hingsburger, talking, as he does most days about a little story of people with a disability running into ‘normals.’

My random thoughts about my day

Even in one of my favorite tales, H. G. Wells’ The Time Machine, which I’ve talked about before, in a highly dysfunctional future society which manages to continue working somehow, and where characteristics have split into the industrious but subterranean Morlocks (who keep the world working but look like trolls), and the fragile beautiful Eloi (who basically do nothing useful but tug at the Traveller’s sympathies because they are scared), there are no disabled people.

Who we are

We get ignored a lot. But worse than that, we get looked down on. We get blamed for sucking up resources and money.

Periodically someone suggests just getting rid of us all (this is called eugenics: from Wikipedia, ‘a set of beliefs and practices that aims at improving the genetic quality of a human population’).

Please do try to remember that Dr. Stephen Hawking is disabled.

We are everyone else

Do please also try to remember that humans are fragile, and each of us is one second from not being at all, and one second from becoming one of the despised disabled – and in need of all those services they considered too costly before one of them needed them.

We want to work if we can

Some of us can. Some of us try to support ourselves by our own labors (I’m not in that category; I supported myself because I had disability insurance, something everyone should consider as it is 5 times more likely to become disabled than to die during the ‘working years’).

Some of us can’t. Luck of the draw. Chaos theory and an automobile heading toward us one inch to the right (ask novelist Stephen King; or better still, read the end of On Writing, where he has detailed how a careless driver nearly removed him from your list of best-selling authors).

Some disabled people are capable of producing great work; some are capable of producing a different kind and level of work. But most of us take longer, sometimes a great deal longer, to produce that work. Slow brains or bodies make it a lot harder.

Personally, I think those who keep trying anyway – against the disdain and rudeness and downright hatred they might encounter in public spaces (yeah, that kid with Down Syndrome clearing your table at the mall is, how lovely, a target for teens who think they are somehow responsible for their own wonderfulness), are demonstrating how important it is for us as humans to contribute to our society if we can.

And yes, I’m one of those, so it does sound like I’m tooting my own horn, but today is my day, so I may be permitted a small ‘beep.’

And, of course, we are your brothers, sisters, parents, children, neighbors…

Who of us does not know someone in this category?

And which of us gets through life without?

Please celebrate with me.

We’re not different. So would the world kindly stop treating us that way?

And, if it pleases you, buy our work. It might even be created to much higher standards than you think (hence the title of this post) because it costs everything we have. Yes, you are permitted to make me go viral if you like my fiction, and yes, I am working very hard (and incredibly slowly so as to keep to those standards) on Pride’s Children: NETHERWORLD.

Those who can support themselves by working would really like to do that. And those who can’t will be supported by our taxes, too. I’m good with that.

Please ignore the slightly old-fashioned tone: I have been reading Miss Manners.


Sunday, December 3, 2017




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.










The delicate sensibilities of a writer


I’m sitting at my computer feeling sorry for myself, and I get a sign from God: a hair is annoying me by touching my wrist.

I look down, don’t see it.

But I feel it, and I know it’s there, so I reach down anyway, and pull that thin white invisible hair up with a ‘Gotcha!’ feeling – and I know what He’s trying to tell me today, just this minute, just for now: if you can feel a single hair on your wrist, and KNOW it’s there, you have the sensitivity you need to write.

It has been a tough time. The Amazon ads don’t work – I have not yet figured out properly how to attract the people who click on my ads to continue on to buying, followed, it is hope, by reading, and then by whatever post-reading effort a reader might make: review, recommend, …

Winter is coming.

The days are significantly shorter, and today is the Fall Equinox.

One more time, I have not used the summer well, and now it’s over.

I think the hummingbirds are gone – I haven’t seen one at the feeder in days. I wish them well, on their long and unbelievable journey to Central America. If I manage to move, as we hoped to, I won’t be here to see them next year – I will ask the next owners to put up the feeder. Maybe they will.

Or maybe they will decide that all these perennial flowers – the bee balm for the hummers, the black-eyed Susans, the butterfly bush, the lilies – are too much trouble to weed, and they will replace them with lawn.

If we are still here next spring, when things need weeding and pruning again, I will have failed – but the urgency isn’t making anything faster.

New beginnings.

I just want to be in a different place for the next thirty years, if God grants me that many. A place with other people around – we have become very isolated, and it’s not going to get better.

The cul-de-sac at the end of the street needs new children on tricycles.

I can clean the windows, with assistance, one more time, but it is getting to be an almost impossible task.

It hasn’t been a good year, what with fires in the West, hurricanes in the Southeast, and earthquakes in Mexico. And genocide in Myanmar. And stents in my arteries.

Will California really be better? I remind myself the Big One hasn’t hit yet. I’m scared of moving, but more scared of staying.

The real reason?

It’s too hard to write when I keep getting interrupted by things I can’t do well needing to be done, and I’m hoping that will be minimized when I no longer feel responsible for a house. And I have a narrow window here to make use of a gym and a pool to improve what capabilities I can, and I want to do that before it’s too late.

So I can write.

I’ve missed my 40s, 50s, and almost all of my 60s due to disability; I think living in a place where someone else is responsible for almost everything has the potential to be better.

I want to be selfish.

Does this resonate? Time passing and opportunities drying up before you get to use them?


Fiction: the SECOND-BEST path to empathy


En carne propia‘ – ‘in your own flesh’ – is always the best way, subject to the limitation that reflection is necessary to develop empathy, and a certain amount of facility with the concept of sharing something emotional with another human being, which is not necessarily evident in all cases of shared experience.

Having cancer does not confer automatic empathy with other victims of the disease.

And direct experience also has the flaw of actually being divisive if the two people with the same experience have reacted very differently, and they put that down to some inherent quality in themselves. This results in the ‘I got cancer, and I did X, and now I’m far better than those lazy sods who won’t make the effort to do X…’ phenomenon.

Because direct experience doesn’t include another person.

You’d think it would make people empathetic, or at least sympathetic toward the others in similar circumstances, but no.

Fiction is a largely underused way to deliberately develop empathy

The fiction-based trick is that you can be pulled into experiencing what another person – a character in a book – experiences, IF there is enough information in the writing.

On August 22, 2017, I had a guest post on Big Al’s Books and Pals, and I posted the link to that article here. The title Al chose out of the ones I supplied as suggestions was ‘Want to be someone else? Read fiction.’ Which is true, but didn’t mention empathy. My bad – I should have chosen my own title.

I had a couple of interesting conversations there with readers of the blog who commented, and that was the extent of the feedback.

I’m reproducing the whole post here:

Fiction is uniquely positioned to develop and increase empathy, because it provides a way around and under and through the barriers most people put up around their hearts and minds.

Humans think in stories. Why? Because we spend our lives learning the rules that ensure our survival.

Our brains are wired to learn in two ways: first, by direct personal experience – a hard way to learn some rules. Our feelings then cement the lessons, make them unforgettable.

And second, by empathy – acquiring knowledge through the experience of others.

For this, reading fiction is the best way to learn. The rub is the experience has to feel real for it to serve that purpose, exactly as if it happened to us. And the way we do that is through our emotions, which are engaged when the experience is ours.

Fiction is better than facts: facts have no emotional component to make them stick. We store them away, hope to remember them when we need them. Going on a hike across the desert? Bring water. Check.

Fiction is better than non-fiction: reports of the experience, say, of crossing the Antarctic in the middle of winter, are both entertaining and raise in us sympathy for the sufferings of the explorers. Poor guys!

And reading fiction is much better than video input for one simple reason: we can’t pretend video is happening to us when it is so clearly happening to someone else. Sympathy, not empathy.

And that’s the key: reading fiction is the best way we have to feel the emotions created by experiencing something as directly as possible without it happening to us. Because, as we read, we have to put in the effort to create, out of black marks on a page, the actual experience in our minds.

Listening to stories works almost as well, but requires a storyteller, and the emotional component is affected by that teller.

Reading is just you and the book.

Oh, and the author.

Most fiction invokes the sympathetic response in the reader – the entertainment value hooks the reader, and we’re off on an adventure. There is absolutely nothing wrong with this, because we need entertainment to relax after our own lives, however crazy or calm. Lots of entertainment.

But the best fiction aims deeper: to ‘grab the jugular.’ To ‘feel like a punch in the gut.’ Or the dreaded, to make you think. Which is really to make you experience, to fully engage your empathy, to make you feel as if it happened to you. To teach you. To change you.

Here is where another of the rules of life comes into play: humans hate being preached to. The preaching is an overt attempt to change the reader or the listener, via logic backed up with emotion. Usually negative emotion, fear: you are bad, you will go to hell, you must change! You are bad, you will destroy the Earth, you must change! If you touch the stove, you will get burned, don’t!

So the author without the moral authority of the preacher or the physical authority of the dictator has to be sneaky. Covert. Tease and wheedle rather than command. Better still: make you complicit in your own change. Make you want to change.

And how does the author do that? By pulling you in with superior entertainment value (remember, we need lots of stories) up front, and by layering the experience which creates the empathy for the new experience under that. Great stories, story moral picked up by the reader from being the character, having the story happen directly to him.

We then come full circle to Show, Don’t Tell. Show the character having the divorce or being attacked by terrorists or marrying the prince. If you have your parameters right, if you’re telling the story the right way, the reader has identified with the character, and the reader is getting divorced. The reader has to escape the terrorists to save the President. The reader walking down the aisle just realized the rest of her life is proscribed by royal protocol.

The author’s power is very real.

Authors don’t always use this power to its fullest, because there is a final step: choosing the purpose of the empathy, choosing the change for a higher aim: the good of humanity.

Sounds horribly preachy, doesn’t it?

What prompted this post is that I don’t like a recent way this power is being used, to push an agenda which makes me sick to my stomach: the proposal, supported by carefully crafted stories, that people who are defective/handicapped/ill should remove themselves from the world because they are a burden to other people, and that this frees the other people to go on to something better.

Disabled people already face an uphill battle in many areas of their lives. Having society go back to an earlier model of disability which says that ‘they’ are a burden to other people, and therefore don’t have the right to the same hopes and aspirations as the ‘normals,’ is a huge step backward. To encourage them to consider removing themselves is a further abuse against their rights to live and to love.

As an author of fiction, I have the following tools:
I know how to create sympathy and empathy.
I know how to appeal to men and women.
I know how to entertain.
I know how to bury something deep in the fabric of a story.
I know how to make you identify with a character.
I know how to create situations that test the limits of character and privilege.
I know how to manipulate your emotions.
And I know that ‘disability porn’ – using disabled people to be ‘inspirational’ – is roundly despised by disabled people everywhere.

By picking the right story to tell, I believe I can make you buy my premise that disability is not the end of life as you know it.

Now that I’ve revealed many of my secrets, you still have to decide whether you’re going to let me try. And then decide if I know what the heck I’m talking about.

Why repost my own post?

Because I don’t think readers of the original blog, which sends out daily emails with reviews of indie books, are used to posts that are not a review, and I’m hoping the ideas will resonate with readers of this blog.