Tag Archives: self-improvement

Liberate the writing mind from the tyranny of time

PLAYING WITH TIME IS THE WRITER’S TOOL

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

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

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

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

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

Half our metaphors and clichés involve time:

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

Our most common question: What time is it?

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

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

So much so that we hardly notice it.

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

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

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

Loosening the grip of time

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

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

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

Manipulating time – for story

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

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

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

‘Going to the paper’ in real life, too

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

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

Respecting time

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

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

Pretty big order, there.

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

How do you finagle ‘time’?

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The major stressor and the Gordian knot

SOMETIMES THE SOLUTION IS OUTSIDE THE BOX

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

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

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

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

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

The signs were many.

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

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

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

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

Full speed ahead, man the torpedoes!

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

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

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

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

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

Such a relief: I agree.

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

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

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

Update on Pi day 2018: almost alive

JUST SURVIVED ANOTHER SH*T STORM

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

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

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

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

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

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

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

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

Fearlessly make a stress inventory and face it

FACING STRESS IS A TOUGH ONE FOR ME

I realized that I’ve been living in a very tightly wound knot, and I’m making myself aware of how often I need to relax my shoulders and breathe.

Stress has the potential to further affect my health, even as far as accelerating my death, and exposing me to not very pleasant forms of that.

Normally, I’m a calm person, but the past couple of years, continuing chronic illness (ME/CFS), the debilitating back pain I will find a surgeon for once we’re settled (maybe), plus new health challenges give me a resting platform that would be too much for anyone not used to it (or who has a choice).

But I didn’t realize how MUCH stress

I’m laughing at myself (laughter at self, good) because I recently identified that my assistant, who works for me part-time, was carrying way too much stress from her other, real, job, and family circumstances, and I wisely gave her one of the stress inventories available online, suggested she fill it out, and she did, and she discussed it with her doctor WITH her parents present – and I think it helped.

So I was primed – and knowledgeable – and still to clueless to realize I had an awful lot of extra stress this past year.

Fear for your life is big stress –

but you can’t think about that every minute. Not unless there’s something you need to be doing.

Including coming up this Feb. 21 on the one year anniversary of the stent debacle last year (from Feb. 6 to 22, IIRC), where it took the (?) cardiologists three heart catheterizations, 4 hospital admissions in two hospitals in different states, a nuclear stress test, and luck – before they found the place (on the third stent) which was going to cause a nice heart attack as soon as it closed up a bit more. Don’t ignore chest pain, folks.

Two more days, and all I’ll have left is the medical PTSD (keeps biting at odd times); the memory of the horrible side effects of the drugs, all of which I dumped; the possibility of more drugs if the flu (yup, I’m getting over the flu, too, and yes, I had the shot) after-effects don’t go away.

I hate turning into a hypochondriac, so I ignore anything that isn’t severe – while remembering that doctors sent me home from the first catheterization with chest pain – and a clean bill of health.

So, facing the stress requires listing all the possible sources

Very partial list:

Moving: We’ve lived in this house, only the second one we’ve ever owned, since 1981. On March 5th it will have been 37 years. I’m pretty useless around the house any more, so all the fixing will have to be done through intermediaries, which means finding, making decisions, following up on, paying strangers wandering through my house. And making the decisions (and expenditures) necessary to sell a house in good enough condition to attract a decent buyer.

Dejunking: With each assistant, I’ve been dealing with the stuff which accumulates in a house with five people and the mother ill. For literally YEARS. With no false sense of keeping it all forever. To show a house, it must be tidy, the closets must feel airy and large, and the storage spaces should appear ample. Do you have any idea how many coats I’ve given away? How many remain? And how many are not mine?

Finding our forever home: I’m not doing this again, so we have to pick a place to live, with our diminishing energy for the task and before other people have to do it for us, that we will die in. I’ve written about Continuing Care Retirement Communities (CCRCs), and we’ll be visiting California to pick one, knowing it’s intended to be a permanent move.

Kids: I will point out that any good parent of adult children worries like crazy about everything (and ours are doing well), by definition.

Family: How to see our far-flung offspring, and arranging the once-a-year vacation, with activities at all levels from zero (me) to healthy young adult. We weren’t doing the ‘visit Mom and Dad for the holidays’ thing anyway (they no longer really fit here, and there’s nothing to do, especially nothing I can participate in).

Finances: Goes without saying, even if you have savings – plus there’s that pesky bit about spending after you’ve spent your entire adult life (especially since disability meant I would not be earning again) NOT-spending. They want how much for a two-bedroom apartment at the CCRC?

Gizzy: A big problem. Rodents are not welcome at all CCRCs, chinchillas are long-lived, and she’s been a bit spoiled. It would be better for her to have a younger owner. Define ‘better.’ And how to find one, and hand her over safely. I will take her with us if I have to, but I’m coming to the realization that this may not be the best solution for either of us. Love the little gray furball.

You get the idea.

There are actually many many more, and some of them are connected with writing.

Slow writers have a problem in that the possible feedback from self-publishing (not even going anywhere near what writers who are not established enough to call the shots go through with traditional publishing) is slow. Unless the writer does all the things successful indies do – promotion, newsletters and mailing lists, interviews, keyword ads – the best help is the next book, and Pride’s Children: NETHERWORLD will probably not be finished this year, not at the current rate. It goes well – the advantage of a writing system like mine is the ability to work on a manageable piece at a time – but slower than usual.

Benefits of dealing rather than slogging on

The payback for doing the move should be the ability to dump a lot of the above stresses, and get back to a writing schedule which doesn’t keep getting interrupted.

Okay, those of you laughing in the back: I know it doesn’t work that easily.

But I do have the fact behind me that when I finished my parents’ final tax returns, and mailed them to the IRS, that stress just stopped. Hard. I worried for a day or two I might have done something incorrect – and cut that out. The paperwork supported the returns I mailed in – and that’s that. I have a nice plastic box an inch thick only with everything I might need if audited. Done.

I have started

I sent my assistant to the basement with my iPhone to take pictures of the information on the tile boxes. I checked out that the tile store I bought the front hall and bathroom tile from are still in business. Closed, by the time I checked, but open tomorrow.

I called the recommended mason. Yes, he does chimneys on roofs! Sent him pictures I finally extracted from the husband’s OneDrive. He is coming by tomorrow to take a look. Yes!

Oh, and I finished the last beat of the last scene of the next chapter – and listened to it in the robot voice – and it’s fine. I think I’m writing cleaner and sparer as I go (but it could just be this scene).

I firmly believe there are a finite number of steps necessary to get a house ready for market. I am determined to direct the efforts. I talked to someone who will call me back tomorrow about staging (yay cellphones – she was half a country away on a trip).

The flu will go away. I will find something to eat, and watch Olympics, and try to get some sleep.

And go back to whatever I can do tomorrow.

Did it help to list the stressors?

Yes, but the danger there is that listing is not reducing. Only reducing is helpful in the long run. Had we any intention to stay here when I started nagging several years ago, they’re gone. The movement is forward, interrupted by everything.

It’s keep moving – or literally die trying.

If I could finish my writing first, please?

The pain of discovering typos in published work

ONLY GOD HAS NO TYPOS

Pride goeth before a fall

I know that. I expected that. And my typo rate was, I thought, rather low, especially considering that I ended up being, for reasons too long to go into, my own proofreader.

And I worked my tail off at it. It’s very hard to be critical of your own work. So? It’s part of the job.

Now, I have found egregious (well, to me) typos in traditionally published books – one major book on writing that I use almost daily has ‘principal’ (main, or the guy who is in charge of a school) instead of ‘principle’ (fundamental truth or morally correct behavior) not once, but twice – so the author got it wrong and the proofreader failed to correct it; or a proofreader got it wrong, changed it, and the author didn’t catch the incorrect correction. Or they both have no idea they don’t know.

I earmarked the place, and occasionally toy with the idea of sending a note to the author (which I don’t do – not my circus, not my monkeys). For future editions, you see. Because it is the kind of book that gets future editions.

But it amuses me to know it’s there. And I still love the book.

Proud of having low error rate, until…

I had found ONE wrong word, ONE extra ‘s’ at the end of a word, and a couple of places where, when doing the final formatting pass through MS Word (to get widow and orphan control, running headers and footers, and right margin indents for the print version of Pride’s Children), WORD inserted some stupidities (specifically, leaving –” as the only thing at the beginning of a line, 5 or 6 times) after I published.

They’re on my list of things to correct on the CreateSpace file (yeah, it’s on the to do list, somewhere in the 9000s). No one who reviewed has commented on those tiny typos, so they’re not all that significant in the flow (or my readers are being kind).

And all but the first two are not present in the ebook, which didn’t go through Word.

Acceptable. Imperfect, but not too much.

Possibly because my youngest daughter mentioned it (she finally read the book!!!), I was a little more attuned to a particular possibility when I was sitting in the doctor’s office yesterday, reading my own book.

And then, wham! I saw it. I’m not even sure if it’s the same thing my daughter mentioned (though it may be), and I now know exactly what I did, and it really doesn’t affect the story that much.

But I am now aware of a FLAW that I, as a perfectionist, can’t let stand.

Easy to fix?

Can’t let it stand.

You know me.

I moved the idea of putting an errata page on prideschildren.com up on the list – so those lovely people who purchase the first book in the trilogy in paper can correct their own copies (not that many readers, but still…), possibly now aware that they have the coveted First Edition – flaws and all.

Or I can slink away, offering (consider yourselves offered to, if you are one of these wonderful people) a corrected copy as soon as I can make them, and being aware that they were either too kind to point this out to me, or, better, too engrossed in the story to even notice.

The ebook will be corrected (again, asap – not a fast possibility, either), so that anyone who downloads it again will automatically get the corrections. If they care. Because this new little typo is in both versions. [hangs head]

The good side

There’s ALWAYS a good side.

I caught it (before I had a chance to look up my daughter’s questioning whether I had it right). From reading it myself in a relaxed way, with nothing else to read. Rather than from it being scornfully pointed out by a reader. Rather less painful – or is it?

Because I’m indie and self-published, it is both my responsibility and my right to fix it (so I don’t have principal for principle for all eternity of this print run).

CreateSpace and Amazon make it easy to fix (haven’t done it yet, so that’s ‘easy in principle’ for now): I upload the corrected files (I believe), wait, and within a couple of days, I can hold my head up in public again.

I have added (mentally – that darn To Do list is so darn long) a few things to the ‘look out for’ list for my AutoCrit editing passes. Especially since my brain appears to be losing its mind, I will now examine every single ‘s in each scene because the world not understanding that plurals don’t have apostrophes is its problem, not mine. I will speak sternly to the brain, and it will whine that it’s so overburdened already, and I will remind it that I’m in charge.

Etc. I.e., I will improve my skills based on this little irritating contretemps.

And because I’m indie, I don’t have to deal with a proofreader about the whole thing.

So why am I making a big deal of this?

Because professional means that you worry about these details, and that you try to make the next one have fewer (not less) errors.

It’s good for me to see where improvement is necessary (believe me, there is a whole new process in place so this particular little error won’t recur).

And it actually bolsters my belief that self-editing, and learning from your self-editing how to be a better writer is critical.

I stand behind my own work, even in the tiny places.

For the future

It’s okay to point typos out to me if you notice them. I just got a wonderful email back after my beta reader read – and liked – the next chapter. I strive to send her finished work. And her wonderful nitpickiness tells me what she likes, asks questions which lead often to some wonderful back-and-forth, and always mentions the little things. She found two. I love her for that.

It also reinforces that doing the beta reading one chapter at a time has some significant advantages for me: a chapter is a reasonable size chunk of writing to deal with at a time. Things get noticed.

And I can’t see how this would possibly work with a traditional publisher, the timing, and the diffusing of responsibility. All while the writer is supposed to be writing the next book. Not for me, anyway.

So there it is. And no, you won’t find out from me what I did wrong (at least not until the Errata page comes out). If you didn’t notice, I’m not going to be the one to point it out. Nope.

Welcome to the wonderful world of independent writing. PLEASE feel free to contribute your own stories.


Thanks to Stencil and Quozio, my go to places for images. I’m resonsible for the silly words that appear in them.

Is the artist in the way of the art?

IS THE WRITER’S APPEARANCE A DETRIMENT TO HER OWN WRITING SUCCESS?

When I was growing up, books had plain covers (no representative art), and the only means of interaction between reader and writer were the words on the page.

I usually skipped things like Forewords, and if I read the author’s bio, it was a quick pass, more destined to reinforce his name than anything else, so if I liked the work I could find more by him.

To this day, I have no idea what Robert Heinlein looked like, and only know what Asimov looked like because he was a bit of a media hound (and I had him confused with Einstein, which would have tickled his fancy. I think.).

There are statues of Marcus Aurelius, in stone or bronze, I assume – never even thought to look.

Modern digital life has changed all that

It is almost annoying when an author goes to a great deal of trouble not to let readers know what she looks like.

I prefer actual current photographs for avatars.

It is a problem for those with multiple pen names.

And I wonder just how much it influences the readers, especially in some genres.

Should Romance writers be pretty?

Humans who have sight are very visual creatures. It is estimated (somewhere) that 80% of our energy goes to dealing with visual input.

We react negatively to ugly things – after millenia of evolution that correlated ugly things with things that were often bad for us, such as rotted animals or toxic snakes.

Other things, such as the thickness of the ankles of young women in countries where sunlight was insufficient part of the year – which is an indication of ricketts, a disease which might also have affected her other bones, and make her more likely to have problems in childbirth, have gotten folded into our standards of beauty: thick ankles = not attractive.

I notice the way authors present themselves (check out Kristin Hannah’s Amazon author page) – and wonder how much that affects her sales (she’s gorgeous, and that’s a great photo). Wonder how any others can compete.

Do readers wonder if any of what’s in the stories is based on experience?

What about opinionated authors?

What do you think of authors whose claim to fame includes a very solid amount of in-your-face-ness? Are you more likely to read their books?

I loved Rudyard Kipling stories; reading about his attitudes has put a bit of a damper on reading his books, and would make me think hard about gifting them to a grandchild if I had one.

I make judgments about people based on their appearance

All the time.

I also immediately catch myself at it now, and look at those judgments dispassionately to see how much might be true. I have managed to change my own opinions quite a bit by a continued practice, and no longer automatically make some judgments which used to bother me a lot because they were so automatic, and couldn’t possibly be true.

But I’m wondering if, in the race for sales, those who look good have an unfair advantage. Again.

At least in getting started in the race.

Choose how you present yourself online

Not suggesting this should change, but I can’t quite stop making those automatic judgments about the photos that people choose to represent themselves with on their author page. Or avatar. Or book cover.

The good thing is that it is usually just at a few places, say Amazon, FB, your blog, and they don’t get to see what you look like first thing in the morning.

I need to work on that.

Do you ever think about how you are influenced by what you ‘know’ about an author?

The slow posts of summer 2017

THE SUMMER SLOW DOWN IS ACTUALLY A SPEED UP

This is a stub, a placeholder, a tente-en-pié (keep you on your feet), an appetizer – lagniappe?

Any one of those words that means a quick update and not a thought-out post with a point.

Why? Because when other bloggers stop blogging, I worry a bit.

Don’t want you to worry. There have been no recent crises – Yay!

On the To Do list:

Writing NETHERWORLD. Yup. Main A1 priority that keeps getting a day here, a day there (the least efficient way for me to write). And publishing Too Late.

Finding a permanent place to live – for which I have, up to now, processed more than 110 CCRCs (Continuing Care Retirement Communities), most of them in California, to see if we can 1) afford them, and 2) find a community we’ll fit into.

Paperwork for my Dad’s estate, too long on the to do list, but the IRS has made each simple step complicated. I will persevere.

Getting healthier. Here I would like to report slightly better walking capacity (after days and days and days of lower back strengthening exercises), and continued cardiac rehab (though I haven’t been able to increase it much since I started, I’m now into my fifth month, which is some kind of record).

Dejunking the house prior to getting it on the market. This means the Christmas tree came down this week. You may applaud.

I think that’s the major ones.

CCRCs in California

The why? It’s drier (humidity and I don’t get along), and the places we’re looking at have better weather. I have been warned – not all places in California have ideal weather. The spouse put me onto the idea of getting an idea of each city from Wikipedia (who knew each has a page?). If there is a Climate section, the little graphic illustrates temperatures, rainfall, and sometimes humidity for a year – which is exactly what I need to compare, say, Sta. Barbara and Bakersfield (nice, not so nice).

I now have had hour-long conversations with about 21 salespeople (the shorter list), along with getting electronic and snail mailed information, and followups. I learned a lot.

The basic information on the websites seems to be 1) we have apartments and/or cottages, and 2) we are the best CCRC in California. So there’s some hype.

Considering that one of the major decision factors is cost, you’d think they’d be a bit more up-front, but if there is information at all, it is usually, ‘from (quotes entrance fee for tiniest unit and monthly fee for one person in it.’

Not very useful or realistic, and I hate to hang up the minute someone tells me the actual numbers (which implies I couldn’t go). The reality is that we have some choice in the matter, but a place is going to have to be perfect for us to go for the higher costs (and most of the for-profit places in the San Francisco area are simply not an option).

I’m to the point of running numbers past a calculator and guesstimating some scenarios on how long we’ll live (always a fun exercise) and how long we’ll need what kind of expensive assistance to do so.

Dejunking is slow going

Not because I can’t get rid of stuff, but because doing so requires me to give my assistant (who’s been a little erratic due to real problems) permission: ever single item in this house not in my husband’s office is my problem.

And some of it has to be kept around so the house doesn’t look razed when we show it.

My brain will tackle that problem far better when it doesn’t need to do phone calls and financial calculations with its little bit of energy, and we have a very short list of places we would willingly move to tomorrow.

And when the heat and humidity abate a bit, and we can stand to dejunk the garage some more.

It’s amazing how much stuff goes when an assistant takes it to its next owner for you (or makes it disappear). Until you get down to family photos and the CD collection you always meant to put on a hard drive.

Exercise, walking, etc.

Here I have to be extremely careful. We CFS folk can overdo things in an instant – and have to pay for it with days of getting nothing done, and huge amounts of extra rest.

I’m so far over capacity already with all the extra stuff on top of what I had before that all I have to do is go to a meeting with the financial advisor (a short meeting, he said – ’twasn’t) to lose two days.

I’m looking forward to living in a CCRC where the plan will be: write in the morning; get more fit/relax/float in the pool/do a short stint in the gym/walk to dinner, in the evening.

I swear.

Meanwhile I have to keep the spine from insisting on more surgery (so far, so good, and I don’t trust any of the surgeons I’ve seen). This requires daily exercise and stretching. Lots. The stronger the spine gets, what do you know: the easier the walking has become.

But we’re talking micrometers. I know – husband can’t even tell. And it’s made me do things I shouldn’t have done (leaving the walker in the car for something that turns out to be a longer walk than I planned is the #1 problem).

And the perennial: removing a few pounds from the joints would probably help; meanwhile, don’t add any.

Removing all cardiac meds made a huge difference to all of the above – zombies aren’t good at becoming healthier. Doctor doesn’t even want to see me for six months; BP and HR are behaving themselves nicely with meditation and rest and the rehab (I guess – had to tell).

The career as novelist

Taking a bit of a beating right now, but moving.

The biggest other time-eater is learning and running Amazon ads. I find I don’t do well when the sales are way down (depressing) because I’m not hand-selling, and going viral isn’t happening on its own.

Which means advertising. The last email I got (review pending) had ‘Loved it!’ four times in a row, so I do have a tiny tribe, but I have no reach – and everyone else on the planet (with energy) is writing bunches more books and ads.

I’m trying various targeting ideas. If any of them work…

But the very best time I spend, exhausted or not, is when I’m in Bianca’s skin (today) or Andrew’s skin (last week) or being Kary for a while (right before that). And that’s still good, if a little claustrophobic: I have to get awfully close before I can write them.

Drop a line

How’s YOUR summer going?

 

 

 

 

 

Writing poised under the Sword of Damocles

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

UNSTABLE ROCKS WILL CRUSH YOU

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.

On a bicycle I’m a human being

freedom comesLIFE IS ABOUT USING WHAT YOU HAVE, OR HAVE LEFT

It is a very odd thing, but psychologically important, that you feel different in different circumstances, depending on how you see yourself and society sees you.

It’s probably built into the brain we have that is evolved from millenia of those who survived to pass on their genes: we automatically evaluate those we see for signs of weakness, even when we don’t plan to eat them.

Where is this going?

On a bicycle you can’t tell that I’m disabled. That I can’t walk properly, or for more than a few steps without a walker. I just look like a woman out for a bike ride.

I know many people who can‘t ride a bike because their knees won’t let them, or because their balance is challenged, or because they can’t sit on one for very long due to many problems.

In some sense, I’m better than them.

We judge automatically, instinctively, and if we’re not careful, permanently.

On a bicycle I’m a normal human being.

Not something which botched back surgery back in 2007 has condemned to pain every time I stand for more than a few seconds, and who can’t push off on a stride, but only swing legs from the hip.

Why am I thinking about riding a bike?

Because I have had a major crisis of self-confidence this year, earlier, what with the chest pain and the stents, and the recovery.

And a couple of weeks ago, I got the bike out, did the ritual (helmet, cellphone in the bag under the seat, make sure the hair doesn’t get in my eyes, clip on the pants leg…) and scared myself even though I managed to go out for a spin around the neighborhood.

Forgot my bike gloves, which I later regretted, as my palms were definitely tingly by the time I got back.

First time this year. First time since the approaching winter made it too cold last year. First time since the horrible viruses of November which lasted for three months. First time since I was last myself… You get the idea.

Getting on the bike was NECESSARY to prove to myself I was still myself.

And it failed – in the sense that I felt shaky and uncertain and scared. Because I knew that I was afraid to stop if I had to, because the side effects seem to have emphasized that I’m vertically challenged. Because one of the young college undergraduates in our choir was wearing a cast because she fell off her bike. Because a friend who has CFS fell and broke his foot.

For any number of reasons, that first bike ride didn’t make me feel ‘normal.’ Even my normal, which is a lot smaller than many people’s ‘normal,’ but better than the normal of my friends who are bedridden. I wasn’t back to just hopping on a bike and going for a spin, even the short ones I take.

Solutions?

Well, giving up riding a bike seemed premature (though if you’d felt as unstable on that bike as I did, you’d be seriously considering it).

Buying a new bike? This bike I have is ancient, and rusted, and in need of serious maintenance. A recumbent bike? Or a nice, stable tricycle-for-grownups?

We are looking for a retirement community, and a move to another state is a possibility, and I’m trying not to acquire more stuff now or make permanent decisions about things like this until we are settled.

So, don’t ride the rest of the time we’re in suburban NJ?

The odd physicist’s solution

Or should I say, the physicist’s odd solution? Because it involves physics of stability.

Bicycles are stable, more or less, IN MOTION. 2-D stability, as it were. That’s why they have the kickstand. In motion, they have that gyroscopic effect that they resist falling in the direction perpendicular to their motion. Ie, sideways.

Tricycles have proper 3-D stability. Because there’s something in the perpendicular direction that keeps them from falling over, with or without you on them, whether they’re in motion or not.

Training wheels achieve this effect when you’re learning to ride.

We’re thinking constantly about all the stuff in our house and garage, because a 4 bedroom house with basement and garage has a lot more areas to stuff stuff than a 2 bedroom apartment in a retirement community, which is what we’re aiming at.

One of the things stored in our garage for AGES was a bright yellow cart meant for pulling two small children behind your bike. And that’s what my brain kicked out: stability. A cart intended for small children was designed to be inherently stable: the bike + cart has to be stable while you’re putting those little ones in the back and fastening the seatbelt. Fairly heavy duty for its job: those are your kidlets, and they are small and precious. And HIGHLY visible. With its own reflectors, even.

This time I didn’t fail

Almost didn’t get it attached – that was work. And the attachment mechanism has a plastic pin which went through the snap lock around the bike’s pole – which was maybe not as flexible as it was twenty years ago (plastic seems an odd choice, but that’s what it was). I couldn’t get it through the hole.

So I went and found a nice solid metal bolt of the right diameter, with a nice nut, and have attached this sucker pretty permanently to my bike. It can be removed, but I’m not planning to.

Success!

I put the helmet – and gloves – and bike clip on, stored the cellphone in the little bag, and found that my combination made it much easier for an unstable old rider to get started.

It may have been a placebo effect; or partly psychological (that self-confidence which had decided it found a solution). But I didn’t care. I was up and going, only a little shaky.

I put it to the test on our court: I tried stopping – it felt more stable, not as it had the last time, because I could trust the bike not to fall over, so I could afford to lean on it a bit. It was easy getting started again – I didn’t have to be on a safe place, like our driveway. I was just a woman on a bicycle, stopped. Phew!

All I needed was to not worry about killing myself or damaging something.

I rode around the neighborhood a bit. I stopped to see an old friend I haven’t visited in half a year. She didn’t even think about the cart on the back, but instinctively understood it was more stable.

And I got that little bit of self-confidence up and running: losing the ability to ride a bike was in the same category as when they take your keys away and don’t let you drive any more.

Because, you see, on a bike I’m my normal human being, and you can’t tell how many things I can’t do.

Then I went in and took a nap.

Guest post: patience, boredom, and personal choice in dealing with them

Woman floating in turquoise water. Text: Attitude makes all the differenceWE MAY BE ABLE TO CHOOSE HOW TO RESPOND

Even when we don’t get to choose what happens.

My friend Gay Lyon responded thoughtfully to my whines about patience and boredom, and has kindly allowed me to share her words.

Gay, you’ve thought so much out. I haven’t gone there, because this is actually the first time in which it has hit me like this. I was always able to try to do something, and then that something would wipe me out, and I’d be too exhausted to do something for a while. Repeat.


Gay Lyon on Boredom, Patience, and how she deals with them – better than I do

Maybe there are people who are naturally patient, but I have my doubts. I’m inclined to believe that patience is developed by having no choice. I’ve spent a lot of time the past several years waiting to recover from a crash similar to yours, for days, weeks, months, at a time. I’m on month 5 of this current one. I’ve learned a certain amount of patience, because there’s not a darned thing I can do to hurry it along, and fretting only prolongs it.

In terms of boredom, it’s a question of what to do when you can’t do anything, isn’t it? I can tell you some of the things I do, but I don’t know that you’ll like it, because if anyone had said anything similar to me before I was forced to come up with them myself, I would have thought it sounded preachy and would have wanted to slap them.

My whole life before becoming sick was about DOing. Prolonged periods of having both brain and body conked out have forced me to reflect on simply BEing. Who am I, what am I, if I am not defined by what I do? Do I, does any human being, have any intrinsic worth outside of what we do? Are there ways in which a life which isn’t a life of service can have value? I have no answers to offer, but thinking about it is a way to occupy yourself when you are lying there staring at the ceiling.

Give thanks for boredom, because when I’m feeling really, really sick, I’m not bored, I’m just miserable. Boredom is a sign I’m starting to feel better.

I have to admit, I’m not often bored anymore. I was bored a lot more the first few years I was sick. Most of the time now, I’m too busy to be bored. Not because I do so much, but because I do everything so slowly that getting through the activities of daily living doesn’t leave a lot of time left over.

Another thing which I do when I can’t do anything else is pay attention. Be very observant. Look out the window. Really look. Look at the leaves on that tree; how many colors are there on one leaf? What shape is it? In what pattern do they grow on the branches? Is the top side different from the bottom? Can you see the veining? Applying that level of observation to everything around you fills up a lot of time.

And once you have observed it, as a writer, how would you describe it? Just thinking about how you would put it into words can help hone your craft.

You can apply the same type of observation to your internal self, too. For instance, what is this experience you identify as “boredom”? How does it actually feel? Is there a physical sensation connected to it? Where does it come from? Do you attach a positive or negative value to it, and if so, is that valid?

It’s a cliché to say that although you may not be able change your circumstances, you can change how you react to them. But I believe it’s true that misery comes from the longing for things to be other than what they are. I try to overcome that by actively looking for what’s good (the bright side, if you will) in my situation; things I can be thankful for. The bleaker your current situation, the more challenging that effort becomes.

My whole life, one of my greatest joys has been learning new things. So I ask myself, what can I learn from this? Or what have I already learned, without noticing it?

I hope your time having to rest both your body and your brain is short enough that your question becomes moot. But if not, maybe these thoughts will give you something to do in the meantime.


I’m trying, Gay. It does not come naturally.

Dealing with stress after medical trauma

Painting and drawing tools. Text: Have the tools? Now do the WORK. Alicia Butcher Ehrhardt

ACKNOWLEDGING DAMAGE

Damage comes in many forms in the aftermath of a medically traumatic event to self or loved one.

Humans are fragile.

The point of no return is frighteningly close.

Way too many people I know have lost a parent permanently over a stupidity: the hospital ER staff didn’t consider Mom was dehydrated – until her kidneys were permanently damaged.

Inappropriate drugs in the hospital pushed Dad over the edge.

Cousin Larry went in for routine optional back surgery – at 70 – and didn’t come out. I am a couple of years younger only, and facing possible ‘routine optional back surgery’ to be able to walk properly.

The hospital gave a friend access to infections somehow, and he almost died after a routine biopsy.

I could EASILY not have made it: the 95% blockage causing the chest pain was missed TWICE by the ‘gold standard’ cardiac catheterization, and I was actually sent home as ‘fine’ the first time, to spend six days dealing with chest pain I had been assured was NON-CARDIAC.

Life is short and hard, and we all die at the end, but sudden death – and near misses – wreak havoc with one’s sense of self.

And most of the above happened to people I know in very recent memory, so you can say I’ve been more than usually primed/skittish/on edge. I was chronically ill, but okay because I could write, albeit slowly.

Fear must be conquered over and over again

I’m going to keep this short (ha!), and just put right here this afternoon’s fear thoughts. Maybe they – or the process of getting them out – will resonate with someone:


FROM THE FEAR JOURNALS: May 4, 2017 at 1:40 PM

PTS takes what it takes – I had to spend some time on it because I’m not just snapping back as hoped for.

Am I really that afraid to try to write, given the lame effort I produced on drugs?

I am.

I am afraid of having lost it somehow during this bad half-year, or just the bad three months past.

Fear. Common ordinary fear.

Ouch!

I don’t have enough of a following for them to read my writing if it isn’t great.

Ouch!

I wouldn’t WANT them to read my writing if it isn’t great.

Ouch!

What has taken a hit is my self-image as a great writer.

Ouch.

And the sad part is that I would never do that to someone else. Ouch.

Ego/fear. Takes something like this to shake you up again, because that self-confidence is a trifle fragile.

Or because talent is. Even with hard work, great writers lose it. The Peter Blatty example – Dimiter, which I found unreadable – is always before me (though I should reread The Exorcist – maybe I was less discriminating when I found it so gripping. Ouch.).

Common ordinary fear.

Which is fixed by work. If you’re lucky.

And now I can try to do the work again, and I am immensely grateful.

Even though I haven’t succeeded yet, and am getting frantic.

AFTER-EFFECT: It is taking me a lot longer to get the brain to the functional stage the way I used to, and some days there is no click, and THAT is the after-effect: time delay.

THAT is the drugs and getting them out of my body and the damage there still is.

Additional slowness – to a system that was marginal at best.

I refuse to consider that it may take a year to get ‘me’ back.

But it may take a few more days for everything to come back, for the damage to be repaired.

And I’m still afraid that the residual effects might be permanent: lots more prep – and much less functional time.

And I’m FAR tireder than I think I SHOULD be.

Silly me: where do I think all this effort came from?

Even good stress – defending my choice – is exhausting. None of it is cost free to people like me.

There’s never been any slack, which is why I excoriate myself when I think I’ve wasted time, like today, by not just gritting my teeth and getting back to work. Made it worse When I know I can’t write with that low an energy level.

And [my assistant] is coming, and the other front patch needs weeding, and…


Things are what they are

And none of us expect sympathy or pity for whatever life throws at us and we are forced to handle.

I don’t.

This is part of dealing with the Post-medical-trauma-stress: realizing that it didn’t just add its own bits, but it REACTIVATED all the fears about myself and my writing that I had dealt with/shoved under a rock.

Because that’s what stress does.

It is so hard to let more days go by without getting anything any writing of fiction done.

At least I did my exercises in the morning, and I got out in the afternoon. Both may contribute to eventual improvement.

I’m still working on it. [I’d rest even more if I thought it would help.] Obstinate type.

Comments always welcome – thanks for all the support as I put myself back together.

Heart Sisters is an amazing blog

A hand writing. Text: Bookmark Hear Sister for when you need it. A blog for women on heart attacks, etc.SOMETIMES YOU JUST HAVE TO PASS ON INFORMATION

I have been reading post after post on Carolyn Thomas’s blog, Heart Sisters, and I want to pass on the information that it is FULL of stories about how heart attacks and other cardiac events are different in women – and how bad we are at paying attention to some of the symptoms, and getting ourselves safely (don’t drive yourself, don’t let someone drive you – call 911) to the ER.

All about women and heart disease from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women’s health advocate, heart attack survivor, blogger, speaker on the west coast of Canada

My suggestion? Go visit – and read a few posts.

Then BOOKMARK the blog for the future, for when you may need the information from a woman’s perspective that will make you do the right thing.

The link above goes to the archives. I wish I’d had this information before today – everything I’ve been reading and writing was in reaction to the distinctly male style of research papers.

Medicine could really use an overhaul of how it presents information to women; meanwhile, we have Carolyn.

Real Fiction: How to develop empathy

Girl holding heart made of lights at night. Text: Use Real Fiction (trademark) to develop empathin vicariously. Alicia Butcher Ehrhardt

EXPERIENCE MANY LIVES VICARIOUSLY – BY READING

Let’s start somewhere

NOTE: None of what I’m about to say is meant to ask for help or pity, and certainly not for special privileges. Just understanding. JUST. And, among those whose lives isn’t constrained, both happiness for what they have, and a little of that empathy for those who don’t have it.

Even though political events have made this development more urgent, I’m not going there: better writers than I are doing that right now.

I’m discussing the part of empathy associated with illness, chronic illness

When friends seem surprised that I’m still sick, I want to respond as a character in my novel, Pride’s Children: PURGATORY does:

“Has the word ‘chronic’ been marked in dictionaries as ‘Archaic’?”

They don’t ask this question of people who have ‘real’ illnesses such as Lupus or MS or Rheumatoid Arthritis, do they? If someone now lives with HIV, friends usually understand that there is no cure, and remission is bought by a DAILY regimen of pills under a doctor’s care.

They understand that many mental illnesses are chronic, and also managed with a drug regime – every TV viewer has seen the TV writer’s trope: a violent person who is turns out is to be pitied because he has a mental illness, and is ‘off his meds.’

Invisible illness – can’t see it, must be fake

But if you have one of the invisible illnesses, ME/CFS or FM or Gulf War Syndrome, that are not understood because they have been disbelieved by medical ‘professionals’ in general, you are expected to have made a miraculous and convenient recovery using supplements, alternative medicine, acupuncture, specialists, exercise, diet, or yoga, and are now back to full health because, the groups’ sick in-joke, “You don’t look sick.”

‘Chronic’ thus means ‘inconvenient’ to those inquiring, “Are you still sick?”

It doesn’t mean, ‘needs continuing care for symptoms that wax and wane and never go away.’ It doesn’t mean, to the friends, ‘let’s not forget her because she doesn’t have the energy to make new friends.’

And it doesn’t mean, ‘Advocate for her, because she doesn’t have the energy to do it for herself.’

Then something happens to THEM

And it is too late; they get a crash course in empathy – or not.

Until the ill one is their child, their spouse, or their parent or grandparent, and they have to provide or arrange for whatever care is necessary, ‘chronic’ is just plain inconvenient, unless it is also ‘malingering,’ ‘gold-bricking,’ ‘laziness (she’d get better if she just got out and exercised),’ or ‘playing the system so she doesn’t have to work.’

And then, unfortunately, once they understand, they are too busy to be useful – because they are taking care of said loved one, and the now know how much energy it takes to do that, and have little left for the advocacy that is so desperately needed. Catch-22.

Which brings me to the point of this essay:

There have to be other ways of developing empathy than suffering chronic illnesses in your own flesh.

One of the best – and highly underutilized – is fiction.

But not the special books for children – barely disguised non-fiction

‘Little Tommy has Cancer’ or ‘What Does Ostomy Mean’ or ‘You have diabetes – now what?’ – designed, usually, to help the child, school, teacher, or close friend understand what is going on with the child.

Not usually meant for the world in general, such a book might have a cover picture of a kid in a wheelchair, or with an oxygen supply device, or getting a shot. These books are necessary for the ‘different’ ones, the same as the Barbie with crutches is meant for the different child to see herself (as both handicapped AND held to impossible fashion standards).

They are less frequently bought for the kids who don’t have the disability, disease, or impairment – but are there in the library if necessary. These aren’t the fiction I mean, because they’re barely fiction.

Nor books (or movies) intended to promote suicide as noble

Those are just disgusting: if someone becomes broken their best option is to find a way to tidy themselves out of this world so as not to inconvenience their ‘loved ones.’

Ask any real family affected by suicide whether they feel loved by it.

Million Dollar Baby, The Ocean Within, Me Before You – it has become a trope.

I reserve judgment in the case of ‘intractable pain or depression’ – and I could not possibly judge the person who chooses this exit if it is truly intractable – though I often hope it means they have been unsuccessful at finding help. It is not a matter for fiction, because fiction always conveniently leaves out the real details. Horribly depressed and wracked by pain people can and do have ‘quality of life’ in many cases – when their need to stay alive for those same loved ones is their prime imperative. YMMV.

Alternate preventive empathy development made easy via REAL FICTION

In Real Fiction (TM) of the empathy-developing variety, characters happen to also have a disability, illness, or difference – but it isn’t the focus of the story, while always being there.

Real fiction offers the reader a way to understand without being personally overwhelmed.

The writer can go into the thoughts of the character to show inner strength balancing outer pain.

The reader is thus safe to explore the consequences and conditions set up by the writer, to understand more, to literally be a voyeur – or in modern parlance to inhabit a virtual reality – that allows the reader to experience the life of a disabled person from the inside.

This alternate reality is temporary, and can be left or abandoned if it becomes too much for the reader to bear.

Fiction allows the small details that are important to the character to emerge, rather than be lectured about.

A great example is the book (and movie) Ordinary People, by Judith Guest. A family tries to understand why their son attempted suicide – and the family dynamics digs down into the real cause.

Pride’s Children is designed to be REAL FICTION

One of the main characters is a former physician who has CFS (ME/CFS), and is no longer able to practice medicine (which requires energy and brainpower), but has retrained herself as a novelist.

The story shows the development of her change in the area of personal worthiness for her goals, triggered by an accidental meeting with a charismatic actor which then affects her whole life.

Is she correct in the assumptions she’s taken on as to her own value as a PWC (a person with CFS)? Will chronic illness limit the rest of her life? Can she hope for and desire what ‘normal’ people are allowed by society to want?

At least you don’t have to get sick to find out. You will just have to read.

And be patient. It’s taking the writer a while to finish the story.

What’s your favorite vicariously-lived life? Who would you have liked to really be?

Every writer’s nightmare: corrupted Look Inside

Red Christmas ornament. Words When your sale goes wong; check, check, check; Alicia Butcher EhrhardtGOTCHA! MURPHY’S LAW STRIKES

I deliberately picked clashy colors for the image, where I normally at least try to make something catchy and attractive, because I messed up (yes, I bear full responsibility regardless of whose fault it was), and it may serve as a cautionary tale to other writers.

And as a request for forbearance for readers – don’t always assume the mess you find online is because the writer is an unprofessional idiot.

And, if you’re kind, drop the author a note, saying, “You might want to check your Look Inside feature on Amazon, because it doesn’t look right.”

Trust me, they will (should) be more than grateful.

No, you can’t do everything. No, you shouldn’t be paranoid. But I realize now I’ve seen what happened to me on other authors’ book pages on Amazon – and made that exact assumption: if an author can’t be bothered to make sure their book looks perfect on the Look Inside feature, they must not be very good at anything else, either.

Sigh.

The marvelous Look Inside! feature

After all is said and done – cover, advertising, book description – the most important action call is the Buy button that occurs at the end of your sample on Amazon, at which point the buyer makes a decision on whether you can

  1. write professionally
  2. start a story well
  3. keep interest going

All the advertising in the world doesn’t fix something badly written.

And that sample is the clincher for readers who are now skittish about books which disappoint, from having bought other books and not reading the sample.

So the sample should be pristine, with no errors of any kind. No typographical errors. No formatting errors. No spelling errors. No punctuation, capitalization, or grammar errors.

And preferably both something intriguing, and evidence at the same time that the author will satisfy the reader’s curiosity as the story goes along (as evidence by raising at least a minor question somewhere, and answering it). So, quality.

Because all readers are looking for at that point is a reason not to buy.

Don’t give them one.

A perfect upload doesn’t ensure things will STAY perfect

When I created and uploaded the files for Pride’s Children: PURGATORY, back in October of 2015, I worked my little tail off to make sure that the Look Inside feature was perfect.

Once it was, and all the previewers had satisfied me by showing exactly what I expected to see, I went live.

I then purchased the first copy, downloaded to my Kindle, and examined everything as if I were a customer.

I had done my due diligence – it looked just as I wanted it to.

And since then, I have been afraid to mess with it, because the 5 or 6 tiny typographical errors I eventually found (no book is perfect) were literally tiny – a misplaced comma, a dash which ended dialogue had its quotation mark sitting all by itself on the next line (thanks, MS Word) – and I didn’t want to take the chance of making anything worse.


Here is what happened:

Rather than attempt to tidy it all up, I will let you experience the panic, by putting in the text of the posts I made on my Goodread UK Kindle group author thread.

15 hours, 58 minutes ago:

WARNING: the look inside feature for the ebook, both US and UK (I have not yet checked the rest) is thoroughly broken – and I apologize profoundly to anyone who has looked at it, especially with a thought to possibly buying it, and found the horrible mess that I just found.

It never occurred to me (newbie gets bitten again by the obvious) that anything could change from the way it was when I uploaded it, bought the first copy, and checked it out – about a year ago.

I don’t know when this happened, but I will be spending whatever time and energy it takes to fix the disastrous formatting destruction on the Look Inside feature – the best place an author has to sell a book, because a reader can SEE whether there are problems.

I don’t know, not having bought another copy, and not recently, whether the problem is confined to the Look Inside feature, or somehow infects the copy a reader would download. My downloaded copy is exactly the way I set it up – so again, my apologies if you looked.

I didn’t do this – but it IS my fault not to have caught it sooner.

Mea culpa, mea culpa, mea maxima culpa. It’s MY name on the cover.

I go to fix. Pray for me.

15 hours, 54 minutes ago:

Please note: electronic Advance Reader/Review copies should not be affected – those have never left my hands until I email them to someone.

15 hours, 52 minutes ago:

Phew! The preview here on GR is unaffected.

14 hours, 32 minutes ago:

Amazon Kindle Senior Representative confirmed it’s not my problem, and they will fix it within 24-48 hours.

I have been told by other authors, over and over, to recheck these things – and did not. Let this kerfuffle be a lesson to me to not take anything for granted.

And if it saves someone else time and panic, that would be nice.

‘Check your files periodically, as if you were a customer.’

A few minutes ago:

Amazon’s swift author support came to my aid last night – when I got up this morning, the problem with the ebook Look Inside feature (the print was never affected) for Pride’s Children: PURGATORY was fixed.

They told me last night it would take 24-48 hours, and I braced myself to worry. At 1:30 am, the formatting was still messed up when I went to bed.

The biggest relief last night was finding out that it wasn’t my fault – the file they had from me was uncorrupted.

I will probably never find out what happened, exactly, nor do I really need to know, since it wasn’t my fault, but thank you to the person who reported that the UK Look Inside was not looking good (wish I could remember where I put that notification); I checked later than I should have (I should check these things immediately), and maybe that explains why a 0.99 sale is not doing as well as I had hoped.

But all is well now, and I have learned my lesson: trust, but verify.

And it was an example of the amazing responsiveness I have received over this past year+ from the people who provide service for authors at Amazon. I’ve read of problems at B&N, and others – I’ve only had good service from A.

Admittedly, they somehow caused the problem – but I was asking them to fix it in the middle of the night.


The upshot?

It is fixed – for now.

I ran a sale without checking first (the last time I looked it was fine – really, I didn’t just not look at it for a year!).

I found out by accident that, yes, bad things can happen even if you don’t make any changes to your input files (so I should probably go fix that comma).

Someone may help you by catching a problem – and telling you about it – in which case, thank your lucky stars.

But I should have checked. I SHOULD HAVE CHECKED.

My apologies if you were affected – and hopes you will give me a second chance.


***** Pride’s Children: PURGATORY is on sale wherever ebooks are available at 0.99 (equivalent in your local currency) until the end of New Year’s Day 2017.*****

Books make great last minute presents – an email from Amazon will announce the gift.

To purchase a Kindle book as a gift (from Amazon help):
  1. From the Kindle Store, select the book you want to purchase as a gift. …
  2. On the product detail page, click the Give as a Gift button.
  3. Enter the personal email address of your gift recipient. …
  4. Enter a delivery date and an optional gift message.

The best ‘thank you’ and encouragement you can offer a blogger is to buy their book(s), especially when they do not have a Donate button.

And nobody says you have to READ them (though I hope you would).


Please comment and share your horror stories – I feel like an idiot right now, and it would be nice to have company!

Vacation and chronic illness: the goal is survival

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A view from the boat at the Grand Palladium, Riviera Maya

WHAT IS THE GOAL OF VACATIONS?


***** Kindle Countdown Deal Amazon US Oct. 10-Oct. 18, $0.99, IN PROGRESS *****

Please visit Pride’s Children on Amazon for your copy at a buck if you don’t have one, and give them for presents! It’s an easy way to make a recommendation.


The chronically ill person desperately wants to be normal – because normal is so much more fun.

I can’t speak for those who have always been ill, because they don’t have the memory of being ‘normal.’ But I can remember, almost three decades ago now, what it was like to go on vacation for the express purpose of having fun, taking a break from daily life, getting a tan or a snow burn, doing more exciting things and far fewer of the regular ones…

This is my first morning back from our first vacation in over two years, so, as I haven’t been blogging for a couple of weeks now, I thought I’d take the opportunity to capture the thoughts that a week at the Riviera Maya inspire – because if there’s one thing different for someone barely holding it together in ‘regular life,’ it’s going on a real vacation.

In no particular order:

Getting there: Airplane, taxi, private car, boat, bus…

I have an irritating combination of Chronic Fatigue Syndrome and a major mobility impairment (I do not walk well for any length of time – working on it). I think I would be dealing better with the CFS if I could do as I used to, and get out for short walks on a regular basis, staying well within the energy requirements. And I know I would have deal infinitely better with the mobility if I had more energy.

But what is, is.

To start the trip, we had to get from home in New Jersey to JFK Airport (from where there are far more non-stop flights), which means I started the trip by trying to nap in the car as husband did all the two-hour drive. I remember being an equal partner in the driving – and, as we both age, it would be nice to be able to help. Instead, as you can probably imagine, just getting to the airport has used up most of the energy for the day already.

The wheelchair IS available (always a concern when pre-arranging things), and I’ve gotten over that hump: me not being my slow self is a benefit to my family – whatever the loss of face from being pushed around (and I still feel it after all these years!), the gains in speed are worth it. There can also be some benefits – we often go through a shortened line for security, and have (and need every second of) advance boarding on the plane. My walker, Sylvia, is there for me to lean on – but needs rolling with us, and is one more large thing to deal with at every stage. On the plus side, more than once her seat has been used to transport baggage.

Then just somehow find a way of sitting mostly in one position from boarding to landing, and managing to get at least an hour of actual sleep to restore some of that energy, and we’re at the Cancún international airport for the next part: gathering of the party. Which, since their plane has been mysteriously delayed, requires sitting at an outdoor restaurant with all our stuff for two more hours, until son and girlfriend arrive from Houston, instead of hooking up within ten minutes as originally planned.

Find and negotiate for transportation to the hotel. REMINDER: if you can pay for things with your credit card, your bank usually has a far better exchange rate than almost anything you can generate on the spot, so use it if you can. But the rest of the world is not the US, and you must be prepared to accept lower hotel or taxi exchange rate if all you have is cash. Mexico has ATMs which will give you local currency – if you can find one. The usual perils of travel apply.

Finally, another hour+, and we’re at the Grand Palladium. Checking in takes no more than the usual (three tries to get acceptable room for the Houston contingent), and we end up, finally, at the dinner buffet.

Getting around at the resort

The biggest problem for me is that we love this resort – hugest pools, wonderful beach, great dining – but there is NO way for me to get to most of the places I want to be without an enormous amount of walking (with my trusty walker, Sylvia). We knew that even before we went the first time: TripAdvisor mentions it, the map shows it, and it is a plus for most people (given the array of eating opportunities). They will send you a trolley if you request one, but it can only get you to approximately where you need to be – so most times I opted for just walking the shortest route.

I am trying to learn to walk again, and I’ve walked this past week probably more than in the previous six months, and it was all agonizing, and that’s about the best I can say about it. If my current experiments fail, or I get even slightly worse, the next step will be a wheelchair, and most often husband pushing, and I REALLY don’t want to get to that stage. I am not a small person, and he already has his own limitations and aging. It may force us to consider an easier – and smaller – vacation destination. For now, I just loaded up on the extra ibuprofen (don’t tell my pain specialist – he’d have a fit), and gritted my teeth.

We finally got into a rhythm where the rest of the family would go on ahead, and let me get there at my own pace (which now includes frequent stops to put Sylvia’s seat down and rest). They didn’t like it – love you, family! – but it did help because they could stand in line if necessary. And the critical part for me was that if I was walking with family, I pushed myself much too hard not to always be the laggard, which increased both pain and a horrible new feeling of breathlessness. By the end of the trip we’d worked out a reasonable combination. Adjusting expectations is crucial.

Conclusion: I could have used the hotel’s help a bit more often, but did about right IF they let me do it my slow way. For next time – think very hard ahead of time, and use the trolley more often, even if I have to wait for it, because energy expended in walking can’t be regained, while energy expended in waiting is far less. And the hotel was uniformly helpful – when asked. Must give up some of the do-it-myself pride – which is still, after all these years, hard for me.

Days of sun and pool and never leaving the resort worked for me

I encouraged husband and offspring and potential new family member to do what THEY wanted to do (the kids did a wonderful day at Xcaret snorkeling through THREE underground rivers), and husband took them sailing.

While we older folk established a chair on the beach or near the pool (never worried a minute about STUFF at this kind of a resort), everyone spent the days as they wanted to – the kids did a lot of snorkeling in the salt-water pool – and I spent most of my time in the water.

And not just lazing: I am counting on neuroplasticity and slowly building up whatever muscles I have (because there is still some nerve conduction going on – maybe 30%) to improve my walking. I had counted on the pool being the exact depth for exercises I can’t do at home. So a good half of the time in the pool was spent – in Paradise – doing exercises and retraining muscles and brain.

Don’t sweat what you can’t change

I just ignored the parts I couldn’t do (didn’t go sailing this time, and have still, after five trips there over the past decade, not made it into the salt-water pool), and enjoyed every minute of the rest.

One of the days had a rougher-than-usual sea, and I got a nasty scare getting into the ocean (bit of a tumble) AND out of it (pushed very hard to get out before the next wave, and ended up not being able to breathe for a bit), and I almost let that keep me out of the ocean. But it was back to its normal calm later, and I did get a wonderful session in the beautiful blue-green water.

Marred by my only sunscreen fail. Kiddies: wear your sunscreen. Reapply every couple of hours, regardless of whether you’ve been in water. Don’t forget covering EVERY SINGLE AREA (I missed my lower arms ONE TIME and have spent the next few days slathering with green aloe gel). And let the stuff sink in as recommended. Wear a shirt part of the time even if you look like a dork. Tropical sun goes through less absorbing atmosphere, and will GET YOU. I never missed before, never had a problem – and it got me this time.

The cost to a chronically-ill person

Even in lowest possible energy-expenditure mode, vacations are a stretch. I never actually managed to unpack, used the same clothes more times than I had planned, didn’t find the after-sun gel until days into the trip, didn’t find my critical meds on the way home until it was almost too late…

The small things accumulated steadily.

I ate too much of the wrong things – half of the time from simple exhaustion (okay, the rest of the time from simple greed). Once I go down that path – eating more carbs than I can handle – it takes at least four days of eating very carefully to reverse the process. And there was no way to muster that energy in a situation where the level of exhaustion was very close to the edge, all the time.

The weeks of planning and packing took their toll (but now I have bathing suits!). I lost untold writing time because the arrangements had to be made with my good time (and even then I almost forgot to get us seat assignments for the trip there).

I lost track of where I am in writing NETHERWORLD, and will be doing a complete reset.

My guess: it will cost me another week just coping with the aftermath, and that if I’m lucky.

Would you do it again?

As often as possible.

Because I still can, and a day will come when I can’t.

Because the time with two of my three kids was priceless – and next time I hope we’re all together for the ‘annual family vacation.’

Because I have the feeling that a week of NOT stressing over what I couldn’t control, and being in basic survival mode (in a beautiful place, with food cooked by someone else), plus three of us in the room going to bed at a reasonable hour because we were exhausted (all of us), whether from fun or making it through, is a good thing (I’ve been going to bed WAY too late).

Because the soul needs beauty, and seeing coatis and mapaches and agoutis and iguanas and pelicans and flamingos in their natural habitat was wonderful (wish the idiot tourists would read the sign that says Don’t Feed the Animals Because it Kills Them).

I hope this brings me back to writing renewed.

And because it was, for all the effort and increased pain, fun.

We ill folk can get into small loops where pain and exhaustion are minimized – but so is everything else. Including fun.


***** Kindle Countdown Deal Amazon US Oct. 10-Oct. 18, $0.99, IN PROGRESS *****

Please visit Pride’s Children on Amazon for your copy at a buck if you don’t have one, and give them for presents! It’s an easy way to make a recommendation.


The same person who writes the blog posts writes the fiction.

Share your challenges with ‘vacations.’