Category Archives: CFS – living and writing with ME/CFS/CFIDS

Coping with the experience of having life options limited; methods of managing time, energy, brain fog, and pain; how it has changed me.

May 12 is International ME/CFS Day

Millions of ME/CFS victims are missing from LIFE

Every year this date reminds me that we STILL have no diagnostic marker, treatment, or cure for the devastating disease that stole my life as a physicist in 1989, the week of Nov. 5th.

Another year with nothing really new that can turn me back into a functioning person.

Or even help new victims.

Except that this year there is an understanding that, if we didn’t know what virus had done the damage, ALMOST ALL of the long-covid victims would be diagnosed, based on symptoms, with ME.

But we know that virus, and possibly that will help some of the targeted research that now has been funded to figure out the mechanism of the damage and find a way to reverse some of it.

And maybe, MAYBE, some of that research will benefit newer victims of ME/CFS, and possibly – though the damage is so long-standing it’s hard to think how – those of us who have been waiting for decades.

If you pray, pray for us.

If you’re not the praying kind, think of us kindly.

We’re still sick – and I wouldn’t wish this illness on Putin.

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Meanwhile, Pride’s Children: PURGATORY is still in existence because of ME/CFS, and NETHERWORLD will be out very soon (the disease makes me very slow).

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Where have all the bloggers gone?

Inspired by Where have all the flowers gone? Popular folk song

WANTED: INTERESTING BLOG POSTS ABOUT LIFE AND WRITING

If you’re of a certain age, or ever went to Scout camp, you may already been humming along.

I’m having to sign up to follow and receive via email more and more blogs, because the bloggers I’ve been following for years are publishing fewer and fewer posts, and I need reading material to keep myself centered in the writer-support blogosphere I inhabit.

I write fewer posts because most of my posts have had something to do with the skills I acquired while learning to write – and I’m not actively working on those right now unless I find something I need to learn to get through a current scene.

Because I’m getting to the end of Netherworld – and know exactly where I’m going.

And there aren’t any tricky or new scenes – just the kind of wrapping up I’m hoping will put smiles on readers’ faces, followed by worried frowns about the implications!

I use writers’ blogs to stay up-to-date

I haven’t done marketing in a while (and it shows) because I have two brain cells, and one is needed for breathing, while the other takes an occasional turn at writing a few more words.

But one of these days someone will post something which will trigger something else, and I’ll be off and running.

There are lots of beginner ‘How to’ posts, fewer post on marketing, and almost none on marketing a very small output. At least not successfully.

So I take on new blogs

when I find one which has something a little less basic to say, or is in an area I probably won’t write – hoping to steal the genesis of an idea I can tweak into the book-selling campaign of the century.

I’d appreciate suggestions of blogs to follow, especially if you wouldn’t mind telling me what you like about them.

New platforms may be the problem

I don’t think I’m going to try Instagram or Tik Tok or Book Tok or even Twitter – mostly because I don’t think that’s where my kind of writer finds readers and followers.

Certainly not Youtube – not now! The competition must be fierce.

Trying a Patreon was a waste of time for me (this time) because you have to bring your own followers – and then generate extra material for them. The latter I like – I have lots of words about process and writing – but I don’t have yet the critical mass of followers, and, with very little energy, can’t afford to try.

But a lot of people ARE moving to the new platforms – the young ‘uns don’t use FB much any more.

Where are the readers?

To be more specific for me, where are the readers of mainstream/literary/contemporary fiction, but only those who are not hiding behind the wall of ‘I only read traditionally published and vetted fiction.’

And that, my dear readers, I have not solved yet.

But then I spend most of my time writing lately, and ultimately that will have to yield the answer.

So I try each new blog I find through blogs I already read or people who somehow find me, and participate for a while to see if we are a good fit. There are tens of thousands of my words out there contributing to these fun conversations.

Eventually we will reach critical mass, right?

I’d hate to think the indie experiment is doomed.

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Send me your recommended blogs.

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Don’t throw me under the bus

Davis, California – February 2022

THEY PROMISED US AN ENJOYABLE RETIREMENT

As working people, the ‘system’ promised us, if we worked hard and saved our pennies for retirement, didn’t spend it all, that we would enjoy some years of healthy living, ease, family, and freedom.

Now they want to renege.

The rest of the world wants to go back to ‘normal,’ ignore any public health measures that might prevent passing on a deadly virus which keeps mutating into something even more dire (so far), has killed oh, around a million Americans directly, and, if I’m reading the statistics right, another million or so in ‘excess deaths’ – deaths which wouldn’t have happened if normal ailments had been treated in hospitals in a timely manner.

Well, those hospitals were full of covid patients – still are.

And after every new peak, ‘they’ are quick to assume it’s the last of its kind (remember after Delta, and before Omicron cases started climbing stratospherically?), and give up restrictions before people get tired of them.

The view from the vulnerable block is pure astonishment

In the US and in much of Europe they are already preparing to ‘live with the virus’ – everyone will eventually get it, THE OLD, SICK, VULNERABLE, IMMUNOCOMPROMISED, FRAGILE WILL DIE, and the world will go back to being a lovely place for idiots to party and catch covid at a concert, restaurant, or bar.

And take it home to Grandma.

Who needs Grandma anyway?

People who might have lived for years, decades

Because what they had, while not fun, is manageable: diabetes, heart disease, obesity…

Or potentially curable: some forms of cancer, getting a replacement kidney or a part of someone’s liver or a heart transplant…

are incredibly susceptible to getting covid.

They don’t just fade away: death from covid is painful, exhausting, humiliating – and with little support from family and friends – lonely.

And people dying of covid in a hospital cause other people not to be able to lifesaving surgery or care – and die, too.

Let us get rid of one of these right up front:

Obesity. It’s an ugly word. It’s a word of our time. Before, the chubby of us had reserves for surviving – and potentially fighting off – some diseases, and lasted longer.

Be that as it may.

It is not something that someone can change quickly. Or at all.

Doctor-supervised diets have a 2% success rate after two years.

And it is a cop-out. Just because a doctor doesn’t like it, and blames everything on it, and says, “If you just lost weight and exercised, you wouldn’t be sick,” doesn’t make it so.

And back to the important qualification for being useless: there isn’t a person on this Earth who can lower their weight consistently and safely QUICKLY.

Another is exercise

For post-viral illnesses such as long-covid, ME/CFS, and possibly any others such as chronic Lyme disease, exercise is CONTRAINDICATED. Read that carefully. It means: “Doesn’t help and DOES harm.”

The exercise-and-it’s-all-in-your-head brigade have been thoroughly debunked, their statistics shown to be bad science, and guidelines are changing everywhere. Not fast enough – and with rearguard actions by the biopsychosocial cabal trying to claim their methods actually work (they don’t want to lose all that lovely research money, ‘treatment’ money, and prestige; and in some cases knighthoods or damehoods (sic?)).

New people with our diseases are needy and desperate. They will grasp at anything that offers hope, and they are not good at separating the quacks from the legitimate scientists. They are given something and told it works, and they try over and over, blaming themselves when non-proven methods actually DON’T work.

Worse than that: they make themselves sicker. For every post-exertional crash, the baseline lowers on what a person can safely do. Enough of those, with the very best intentions, and people end up bed-ridden or worse.

Exercise is dangerous for people recovering from these viruses. DANGEROUS.

Compassion fatigue

I always thought, when I was younger, that I would be able to work my way out of anything by just putting the effort in.

As an old person, I would keep walking, keep doing yoga, have the time for more exercise.

And that people who ‘let themselves go’ had brought it all on themselves. Well, some of them have. But I’ve been trying for over three decades and guess what? NOPE. You can’t work yourself out of CFS.

You DO stop going to doctors because they don’t like illnesses without a cookbook approach. They don’t like mysterious illnesses that somehow have normal bloodwork – for the tests the insurance companies will allow.

They don’t like taking into account one of my widely-shared symptoms: intolerance of medicines. We are the people who get all the side-effects of almost everything that works for ‘normal’ people. I actually went through four of the five classes of blood-pressure medications after getting stents (and both Plavix and Effient – which made me deadly ill). My last cardiologist in New Jersey said the fifth kind of BP drugs would most likely make me quite sick, so we skipped them.

The protection of the booster shots for the immunocompromised

should be extended to the elderly if it is warranted.

I’m in the vulnerable category – I got my fourth shot, considered the second booster shot, four days ago. My arm still hurts and a day after the shot during which I felt as if I had the flu was followed by two days of not getting much done because of being a bit woozy and brain-fogged, and I don’t care at all.

In a week and a half or so, I will have whatever immunity my body can build up from the shots, and I was the one who nagged my doctor’s office as soon as the CDC said people like me should have another booster.

We are back, cautiously, to congregant dining – but the husband and I are taking it very slow because I don’t want to get covid at all (I already have the equivalent of long covid; online friends who have had covid on top of ME/CFS are struggling). Everyone here wears masks, distances socially, and avoids as many group activities as possible – except for today, when we celebrated the lives of those fellow residents who left us this past year with a short ceremony and two songs – sung through my KN95 mask.

We are all wondering what will follow Omicron and its B version.

It will take a long time before people like me will feel safe – and seeing mask and other requirements vanishing left and right, when the scientists tell us it is NOT over, doesn’t help.

PLEASE continue to be careful and smart even when the official rules relax.

The life you save may be someone you love.

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I’m hoping my brain will be usable for writing fiction tomorrow.

Please pop over to prideschildren.com and follow if you are a fan of mainstream fiction of the ‘big book variety.’ There is a short story prequel there and a sample. PLUS the first scene of NETHERWORLD, and reports of how close it is to being published.

This post was composed while not completely with it – may be a bit ranty.

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What to do with a negative review

Can ‘Good’ come from ‘Evil’?

WHAT TO DO WHEN A READER DISLIKES YOUR WORK?

The traditional answer to this is, believe it or not, NOTHING.

Because a reader’s review is as much their opinion as your book is yours.

And you are grateful to have a reader who was moved to take up keyboard and leave you feedback.

And because you cannot please everyone.

And, most importantly, because have negative reviews is a rite of passage for writers, and now you’ve had yours.

Phew.

And here you thought having all 5* reviews was a mark of a good writer, and now your stellar reputation is trampled forever.

Is acceptance your only option, then?

Well, no.

The first instinct may be to send out destroyer missiles, but that may not actually remove the stain on your reputation.

The review stays.

But I came across a very creative way to use and benefit from that bad review on a blog post of Tahani Nelson, a fantasy writer. She turned a negative review (a reader got almost to the end of the book quite happily until she realized, oh dear, the warrior princess was gay!) into a great ad for her book. I won’t spoil her thunder – she deserves people to go read her post. Or at least scroll down to her ad. It’s gorgeous. Go ahead – I’ll wait.

So, I thought – YOU have some 1* and 2* reviews

What creative use are you going to make of them?

First, two of the ads (maybe written by the same person?) have the same error: ‘It is 545 pages long.’ Um, no. The book is 485 pages long.

The reviewer accused me of writing tedious descriptions about everything. Um, no. If anything, I am extremely parsimonious in the description department for a peculiar reason: Pride’s Children is written in very deep close multiple third person point of view, and I only use descriptions a character would actually THINK at the moment, which eliminates most descriptions (characters don’t do more than noticing a detail or two most of the time). Whether they’re tedious or not, that I’ll leave up to the individual reader, but I try to think of something obvious but fresh or relevant.

One reviewer must have thought the first paragraph of the prologue – a short excerpt from a faux New Yorker article that is my link between books, and the ‘outside’ view of the story from a magazine writer’s perspective years later – was actually the first paragraph of the book – and called it a run-on sentence. The paragraph is 79 words, a complex sentence but not a run on. The prologue is labeled Prothalamion – in honor of Dorothy L. Sayers who used one brilliantly in Busman’s Honeymoon.

The actual first sentence in Chapter 1 is 11 short sentences in 93 words. With periods or ellipses between them – clearly delimited.

I was accused of needing to prove I have an immense vocabulary. Why, thanks, I do know a lot of words, but all I try to do is use the words the characters would use. Which sometimes is very constraining.

The missing clues to my bad reviews (so far)

Several pieces in the negative reviews clued me in to the problem, and it’s a different one than I originally thought.

“I read Pride’s Children because of my daughter’s suggestion. I am not a fan of romance novels”

and

“the book was much too long. It could have been easily condensed to 2/3 the length”

and

“The number of quotations before each chapter was overkill – for the most part they only made sense to me after the chapter had been read.

And these pieces from positive reviews give different clues:

“These relationships do include romantic attraction and love (and even have it as a central focus), but it’s not the sole focus; family relationships, friendships, working relationships, etc. -some healthy and some not– come under the lens as well. And the development of the central attraction isn’t a “romance,” except in the sense that a Jane Austen novel could be called one (and allowing for differences in setting and literary conventions between the early 19th and early 21st centuries, a comparison to Austen isn’t entirely inapt!)”

and

“I cannot recommend this book, this trilogy, highly enough – but not to everyone. This is a book for readers who appreciate literary fiction and a very deeply developed romance with a thoughtful debate on ethics. I believe the pace and the delayed gratification will frustrate many modern romance readers who look for fast-burning romance, titillation, and simple love stories. However, if you are a reader who will appreciate a modern ‘Jane Eyre’, this trilogy is for you.”

My problem?

There are MANY Romance readers and writers in the world – and they do extremely well by each other.

But they have styles and tropes and limitations and expectations, among others:

  • only two characters in the relationship (excepting the exceptions for subgenres)
  • a point of view that goes back and forth at certain times between the two lovers-to-be – in the same scene
  • relative short
  • a particular style of covers
  • a happy ending (HEA – happily ever after) or (HFN – happy for now)

And somehow or other, even when the cover, description, and ad copy try to convey that Pride’s Children is NOT a Romance which follows what the readers expect, some readers picked it up, read, noticed things were not what they expected – but kept going all the way to the end (skimming, I’m assuming, in some places) – and still decided they were not happy, and left a review. An unhappy one. A 1* or 2* review.

I think that may mean I need to work on my ad copy. I don’t know how to say ‘mainstream love story’ as opposed to ‘Romance’ – because it sounds horribly condescending somehow, but wouldn’t you want to know there were supernatural beings or zombies in a book before you chose it to read, given your preferences either way?

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Suggestions welcome.

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If you read, or even prefer, mainstream love stories, and haven’t signed up to be notified about mine, please hop over to the Pride’s Children blog, and follow so you will be informed when they come out. Not frequently – I’m dreadfully slow – but they’re big fat complicated stories when they do.

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Don’t wait for the band wagon

CLIMB ABOARD NOW WHILE THERE ARE STILL GOOD SEATS

It is axiomatic that there are no overnight successes.

Why?

Because it takes huge amounts of determination and preparation to be ready to respond well when an opportunity finally comes along – and if you’re not ready, it will leave you in the dust and move on.

Take your American Idol singer

The pipes that astonish are not natural, spur of the moment, magically angelic. Nope. If so, they are most likely to freeze at the first sign of stress.

The singer not only sings a lot in the shower, but has had parents paying for individual teachers, has been singing in the church choir, has spent years listening to music, and has been through a whole list of roles in the school plays.

Being on stage in front of a bunch of strangers and wowing Simon Cowell is not a fluke.

The illusion that it is sudden and unexpected and a direct blessing from Heaven is for the AUDIENCE. The ones who want to jump on the bandwagon as it goes by because, “I’m just as good as she is.” It keeps them buying the advertised products, watching the shows, purchasing tickets for Kelly Clarkson when she comes to town.

Even the little Wow! stories are the product of hours and hours and hours of cameramen recording every remotely possible candidate practicing in the hall – to be scrolled through for the exciting bits AFTER the winner has been chosen.

It matters only for the individuals

The producers don’t care who wins – they have SO many contestants that their triage is stricter than that after a major accident: they may let a few charismatic duds go through a few levels they aren’t qualified for – one leaves in the random possibility because crowds are fickle, but the staff’s job is to make sure that the two or three possibles culled out of each thousand who apply are usable.

They have no investment in a particular candidate. It’s dangerous to have one because talent and stardom are unpredictable beasts.

But the individual candidates, those who want to win, have to be ready to win – if it happens.

Artists need support BEFORE

before they are recognized as somehow ‘good.’

before they get discouraged and stop producing amazing work.

before everyone else discovers them.

It is even more important for those who are slow, or for whom doing the work is a great mental and/or physical effort.

I know that I will never forget the earliest responses on Wattpad from other writers, the ones who kept me cheerfully sharpening my nose. Because they KNEW – and SAID so – BEFORE others.

Peter Hyland, one of my characters, says,

“None of my friends are perfect. And most of them are irreplaceable. They provide the mirror when I get too big for my britches. New ones are hard to find.” He squinted at the dying sun. “I need them far more than they need me.

PRIDE’S CHILDREN: PURGATORY, Chapter 13

It is hard for people to commit, to say, “I’ve found this new writer/photographer/painter…, and you should look into their work” to recommend someone to a friend. What if the friend doesn’t like the new artist? Easier not to say anything, and just nod wisely.

But once the wagon is full, one more supporter isn’t going to make that much of a difference.

Getting started is hard – but up to the writer, who is the one to make the decision when something is first ready to be released to the public.

But keeping it going is much harder still, and that’s when the support can make the difference between someone going on to do creditable work – or quitting.

Why now?

It may or may not be important, or a stepping stone of any size, but I’m saying thank you to all my readers who have been saying, “I like what you write,” since I started putting Pride’s Children out in serial form on Wattpad.

You may or may not have noticed the new badge on the sidebar.

Pride’s Children: PURGATORY has been named Indies Today’s 2021 BEST CONTEMPORARY novel, and I’d love it if those of you who read mainstream fiction would pop over to my other site, the one for the books, and sign up to follow that blog as I get ready to finish and publish the second novel in the trilogy, Pride’s Children: NETHERWORLD.

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Is labeling mainstream novels literary counterproductive?

A REVOLUTION HAPPENED AND NOBODY NOTICED

Amazon tries; it really does.

To satisfy its customers, to make searching for what they want easy (easier), to supply it efficiently.

By revolution I mean both also that things turned around – 180° – from where they were, sort of, before.

Because before this all happened, ‘literary’ was a separate category in bookstores.

And literary meant a number of things:

  • Difficult to read, requiring great attention
  • Small in scope – One DAY in the life of Ivan Denisovich
  • Elitist
  • Using difficult flowery language
  • Very detailed – a navel closely observed and described
  • Slow and languid
  • Somehow not for everyone
  • Requiring a large SAT vocabulary
  • For people with an MA in English or Literature
  • Suitable proof for a doctorate
  • A credential for teaching English or Literature
  • With a limited audience
  • Special
  • Art
  • Cliched
  • Maybe French or translated from Italian or Russian
  • Not commercial
  • Often not ending anywhere near happily

Add or subtract from my list what comes into your head when you hear ‘literary novel.’ Please feel free to mention them in a comment.

What’s the revolution, you ask?

That ‘literary’ now means ‘traditionally published good stuff’ on Amazon, and is seen as almost the exclusive purview of, you guessed it, the traditional publishers large and small.

The books that are vetted by agents and editors at publishing companies (excluding the celebrity stuff), and are therefore both ‘better’ and ‘not for the hoi polloi.’

The other similar term is ‘historical,’ which is a little fuzzier and often about WWII, sometimes about WWI or the American Civil War.

Because the term ‘mainstream’ disappeared, and is not the same as ‘contemporary,’ which can be attached to, say, a Romance and a worldview: ‘Contemporary Christian Romance’ is a searchable thing.

It is considered presumptuous to label your own work ‘classic.’

And ‘General Fiction’ is not a category, but a garbage can.

‘Psychological’ is filling the empty slot somewhat – almost all novels for grownups are psychological, but is confounded by ‘thriller,’ ‘horror’, and ‘women’s fiction.’ With, of course, nothing actually labeled ‘fiction for men.’

It used to be possible to find mainstream fiction by looking for ‘a novel’ on the cover. No more. It now means only ‘book of at least 50 pages.’

It doesn’t matter for mainstream because

I’m convinced readers of mainstream fiction who use Amazon come there to find a good price on something they’ve already decided to buy.

I don’t think they search on Amazon. Not beyond maybe being attracted by something similar being offered by the ‘also read’ bots. There is just too much stuff.

They get their recommendations elsewhere – book critics (who rarely do SPAs*), reviews in the few places which still have book sections (print journalism has taken a lot of hits lately, too), and the publicity material put out for their best-selling authors by the traditional publishers (other authors get bupkis from traditional publishers – return on investment isn’t worth it).

So the market is saturated and sopped up by the same few titles which keep those offices in Manhattan open for the publishers (and their unpaid interns).

I’m hoping for virality. It can make the huge difference to a start – and then the writing must maintain the quality so that future books, even if widely spaces, are eagerly awaited.

Feel free to help kick that off – if you like mainstream fiction.

Don’t let ‘the system’ keep producing same old, same old – and then complain you can’t find anything you like to read.

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Thank you for listening to the daily rant. Now, if I could just manage to do it daily! 🙂

Oh, and the answer to the title question is yes: ‘Literary’ has too many negative and restrictive connotations in the minds of too many readers.

‘Literary’ is not a good substitute for such terms as mainstream, ‘big book’, epic, blockbuster, or commercial novel. It isn’t the same. Even when the intent is to make it a synonym with ‘well written.’

IMNVHO (In my not very humble opinion,)

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Final note: Pride’s Children: PURGATORY is taking part today and for the next few days at a promotion at HelloBooks – which has many other wonderful bargains for serious readers of General Fiction (its category) and many other genres.

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*SPAs = self-published authors, sometimes known as indies or independent authors

When the WIP forces change on your writing style

I’VE BEEN STRUGGLING WITH A NEW CONUNDRUM

I didn’t expect to, not this late in the middle book of a trilogy.

I capture these thoughts when they happen, hoping to have something to refer to when it happens again.

The constraint here is both the calendar – the end is near, and the content until the last scene is what it has to be – and a sense of pace.

In the real world, things have their own importance, and can’t be hurried – or slowed. Their pace is what their pace is.

In fiction, however, technically every bit is under the immediate and complete control of the writer – nothing happens without her say so – and completely not. Why? Because the pace you work hard to develop as you go seems to have a built-in speed you didn’t put there.

I’m not used to this

All pantsers are familiar with this.

Whereas I, an extreme plotter, like to think I’m in control of everything.

The story takes over.

And you bumble around in the dark until you learn.

Oh, and try doing this with WRITER brain fog!

You can’t write chaos smoothly

But it can’t be completely chaotic stream-of-consciousness either, not for very long on the page: the Reader won’t stand for it.

So it’s a mixture, and, from deep third multiple pov, you have to credibly present a chaotic situation for a character you’ve already developed (starting that way in Chapter 1 or with a new character is a different ballgame), and who is usually much less confused.

So you will get a little indulgence from your audience, but don’t want to presume on that – or they’ll start skimming, and you’ve lost them.

Balance.

So, another skill attempted in the craft.

I wonder what the beta reader will say.

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If you’re a reader, do you notice this kind of thing? And how much patience do you have for a change in how you see characters, especially when they’re under stress?

If you’re a writer, has this one bitten your ankles?

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One way to encourage a writer

When you are reaching the end of writing a novel, it looks as if you’ll never finish.

Encouragement comes in odd places:

  • a reader wanting to know when the next one is out
  • sales you didn’t expect, didn’t advertise for
  • the writing going particularly well
  • a tough section written
  • and a review that blows your metaphorical socks off (one gets so jaded).

This morning, my inbox contained a link to that kind of review, and I encourage those who are here for the fiction to take a quick look at the books’ sister site, Pride’s Children . com, and sign up there if they haven’t – because NETHERWORLD will be here early next year, and that encouragement keeps me focused.

An encouraged and supported writer (thanks to all my visitors and commenters and fellow bloggers and friends from FB and GR – you know who you are, and I hope you know how important you are) is a happy writer, and is probably writing much better than a discouraged one.

I don’t buy the drugs-and-alcohol motivated writer narrative (one reason being because my body doesn’t process alcohol fast enough and I don’t tolerate most meds), so I have to go on HAPPINESS, the universal salve.

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Sleep and lowered stress would be nice, too, and research to treat and cure this dratted disease (ME/CFS). I’m doing the best that I can.

Reduced brain fog would be ideal.

I’m doing the best that I can.

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Traveling with a nonstandard mobility device

An Airwheel S8 is a mobility device

THE BIGGEST ADVENTURE IN THREE YEARS

I haven’t posted for a while for a very important reason: traveling to the Boulder area for our son’s and daughter-in-law’s wedding reception. (I am recovering slowly from the trip, and am finding my writing very much more basic this week – bear with me.)

The wedding was a lovely Zoom event a year ago – it wasn’t deemed safe to have it in person before vaccines in the middle of a pandemic – and under Colorado law, the kids could do the actual wedding themselves by signing a form. They chose to do that, and did a wonderful job of vows with a backpacking theme – talking about how and why they packed the items for a trip.

This year, vaccinated and safer, the wedding reception took place in a venue with the Boulder mountains in the background, family and friends from all over present.

The ceremony was out on the grass in the setting sun – I made it to a seat somehow, and was misty-eyed at the very personal and heartfelt words. Big smiles by everyone. They make a great couple, and have been together a long time now.

So we had to get there

Our son had asked if I wanted a mother/son dance after his wife’s father/daughter dance and theirs as a couple, and I said yes.

I can’t stand very long, or walk very far, and am extremely awkward and unstable on my feet.

So of course I said yes – these things are important, and don’t happen very often.

If at all possible, you do them, because regret is the cost of not trying.

We didn’t have time or occasion to practice before, so it was a one-time event.

My secret weapon was Maggie

Maggie (for the magnesium alloy she’s made from, and the maglev motors that run her) is my Emotional Support Robot Mini Riding Horse – and my bionic legs – and my mobility device.

An Airwheel S8, she is a bicycle seat on a hoverboard. We are a proud member of a subgroup on the Electric Unicycle Forum (even though she has two wheels).

She can be used sitting or standing, lasts a long time and distance on one charge, and I use her around the retirement community inside (elevators and long carpeted halls) and outside (on the Davis greenway, sidewalks, and bike paths). I don’t stand – but the kids and others have tried that without problems.

The trick was getting Maggie there and back – on a plane

Without damage.

To Denver International Airport and back to Sacramento.

I follow John Morris’s Wheelchair Travel blog, and knew this wasn’t going to be simple.

Why? For a bunch of reasons:

  • Maggie is not a wheelchair nor a scooter, devices most people are more familiar with as mobility devices.
  • Maggie is electric.
  • Maggie has lithium batteries built in.
  • The batteries cannot be removed – the procedure for replacing one is long and involved.
  • Most devices travel in the cargo hold with the luggage, including my walker of many years, Sylvia.
  • Most people have never seen an Airwheel S8 (I am a ham; I do demos at the drop of a hat, and talk about my mobility device to anyone who evinces the most minor interest).

My greatest fear was showing up at the airport in Sacramento

and having a particular crew (the pilot’s word is final) or counter staff refuse to take her on the plane at all.

The next biggest were having my mobility device damaged during the trip, refused passage on the way back, or become lost baggage. My very sturdy walker has been affected by the many trips she’s been on, and the bracket I put on the front to hold a basket was broken off on a trip long ago. I breathe a sigh of relief every time the walker shows up again while deboarding.

If Maggie stops working (it has happened – this is my second Maggie), she becomes a 32 lb awkwardly shaped piece of metal and plastics that barely rolls.

There have been a number of incidents with cheap lithium batteries causing fires on planes and in other places, so I understand their concern – in principle. But electric wheelchairs travel all the time.

If absolutely necessary, I would have dragged myself all over the wedding venues with my walker. But what would happen to Maggie if I couldn’t take her with me was a big concern, because airports are not a place you can store things and time would be limited (as well as my energy, which is my constant battle to preserve).

Preparation before hand was key

I spent a lot of time a couple weeks prior to the trip (over an hour on the phone) talking to the person the Accessibility phone at the airline had at the other end. We sort of figure out that it would probably work. This person said a ‘note’ would be placed in my file for the trip.

A few days before the trip, I got anxious. I went to my reservation to see if the note said what it was supposed to say. There was no note. The only codes were the ones I had written into the form when buying the tickets – informing the airline that I needed a wheelchair in the airports, and that I can walk enough (hanging onto seatbacks) to get to my seat, so I wouldn’t require the on-board airline wheelchair to get to my seat.

Nothing about Maggie, nonstandard devices, batteries… all the things we discussed. Nothing I could mention to a gate person or counter person.

So I called again – and this time got someone who said she was Accessibility – and didn’t recognize the name of the other person! At the same phone number. Not a good start.

The second person was much more helpful for a specific reason: with a little searching, and knowing the airline website, she was able to find the specific wording which would let me take Maggie onboard, either in the wheelchair closet or in the cargo. I printed it all out, highlighted the relevant sections, and brought it with me.

I didn’t need to use it – but it could have gone the other way.

The airport trip was easier because I have an Assistant again

She was available to drive us and our luggage to the airport when we needed it. And she promised to bring Maggie home if something went wrong and my mobility device wasn’t allowed on the plane. Fortunately, I didn’t end up needing to call her back.

Sacramento was an easy airport to navigate: it was agreed I would use Maggie to get through TSA, and all the way to the gate, where the final decision cabin/cargo hold would be made – by the crew/pilot.

So far so good – and then, at the crowded gate (we were plenty early), the gate person told me the crew said there was no room on board for my device.

First big hurdle

The crew person who came out said there was no room. But I was allowed to go down the ramp to the plane on Maggie.

And at the door, I asked to be allowed to see the closet.

At this point I’m sort of holding up boarding (btw, disabled people are supposed to board before ANYONE, including First Class passengers, VIPs, people with small children – a right more honored in the breach than in the observance), so they let me on (I’m hanging onto anything I can at this point, with Maggie about to go down to the cargo hold), and I see that the only reason they won’t put here there is because it has a bunch of crew luggage.

So I state unaggressively but unambiguously that my wheelchair device has priority over crew luggage. I may have asked if they wanted to see the printout of their website written information; I don’t remember – the counter people didn’t want to see it either.

At that moment one of the pilots stepped out, and asked if he could help. I explained, said Maggie could be picked up with one hand. The flight attendant removed the luggage, the pilot placed Maggie easily in the closet, and the hurdle was over. I am very grateful – but still shaking – as I make my way to my seat, hanging on to seatbacks. My husband dealt with the carry-on luggage, sending the walker to the cargo hold, and putting our other stuff in the overhead bin.

After landing there was a wheelchair waiting for me, so I pushed Maggie in front of me through the very large airport, down to baggage claim (on a train!), the attendant got us to the door, our youngest daughter was waiting in the cell phone parking lot with the car, and the hotel room was actually there (you can bet I had called, prepared them for late arrival, and reminded them I needed an accessible room – but the ride was still spent with me worrying). I made sure to tip the wheelchair attendant very well – he was very helpful and stayed until we were in the car.

The wedding festivities went well

Except for me having zero energy, and being totally wiped out most of the time, everything in Boulder allowed me to participate as much as I could, because our youngest daughter rented a car and did the driving, all of it, and we fit.

At the actual reception venue (not designed at all for disabled people), I either used Maggie as a live cane (she is very stable that way, if a bit too short), or people carried her in for me and I grabbed whatever I could for support, and we managed.

The mother/son dance went incredibly well – I assayed a twirl at the very beginning, and it worked beautifully, so we did a bunch more, and it was really great to dance for the first time in years. I’m hoping someone has video!

The return trip was fraught

for a bunch of reasons, including Denver having a huge number of visitors leaving over the weekend (we were grateful our flight was on Monday).

We got there early. The counter help person took a snapshot, and texted the request for the on-board cabin to the gate. First step accomplished.

But when we navigated the busy airport and TSA and train with another wheelchair attendant, and got to the gate early – there was no one there, and the food venues didn’t have anything I could eat. I ate an Atkins bar, and prepared to wait.

When the gate person showed up, it was a repeat of the first boarding, with none of these people having seen my device (usual), or the form passengers are supposed to supply to go with their device to the hold (they said they had NEVER seen one – it’s on the website), and they started telling me the closet was too small.

Again, very unaggressively, I explained that Federal regulations require a certain size closet, and that Maggie was smaller than those dimensions. They came back with saying that there are many different aircraft, and not all have the closet (even if they have the number of seats that require the closet – 100), and that they didn’t think the closet door was wide enough.

It all felt as if they were trying to prepare me to be disappointed. At this point I’m completely wiped out by the trip, the wedding, the problems at the hotel (the only accessible feature I needed was a shower seat – and it turned out to be coming off the wall!), the physical and mental gymnastics required to be a disabled person in an able world.

Back to me

I managed to pretend to be positive. To do my little demo of how well Maggie serves me. To be polite and chatty with the gate person, the flight attendant who basically told me it probably wouldn’t happen but they were working on it and that the door was too narrow, and the pilot who came out and said all the same things, but that they were going to try.

This time I was allowed to be the first person down the ramp.

When I got there, I was prepared for failure, but of course the closet door was plenty wide (they have to be able to fit a passenger’s folded manual wheelchair into that space), the on-board aisle wheelchair was there, in the closet, and completely folded out of the way – and Maggie went in sideways through the door with space to spare.

I dragged myself to my seat, shaking again, and somehow survived the flight home, the wheelchair from the plane pushing Maggie in front of me, baggage claim, and was lucky enough to have the Lyft driver I arranged for as soon as we were at baggage claim and the suitcases were coming out arrive in three minutes, manage to load all out stuff, and get us home.

Feedback to the airline

Five days later I found the energy to fill out their survey.

I hate those things. They want you to check all kinds of points worded so only a horrible person would complain – but I put enough into the text boxes where allowed to give them a picture of what happened, to say everyone was very nice (they were – even when saying no a lot), and suggested that more on disabled passengers, wheelchairs, the on-board closet, and nonstandard devices should be done in training (knowing they all get periodic passes through it), and submitted. I doubt it will do any good, but you never know – I’ve done what I could.

My husband submitted his version – and he is a very supportive man, and didn’t step in and take over at any point (much appreciated) who knows exactly what I go through – he had some extra comments, again, very polite – and we’ve both done what we can with their awkward survey.

The future – I plan to travel more, and Maggie is an essential part

I hope this post gets shared (and I will ask John Morris if he wants a version for his site) because other people need to be prepared.

It was a constant obstacle course. Things are designed for able-bodied people. Any one of several hundred points on the track could have been the sticking point. Everything that eventually worked could have failed. I am grateful to have gotten there and back – and still exhausted.

Everything takes more energy and time when you are disabled – and you have far less energy than everyone else. Not fair, but it is what it is.

I saw no one else in their own wheelchair in either airport. That was surprising.

I’m sure the system is so daunting most physically disabled people just don’t try it most of the time. The mental strain is significant – and I can see how hard this would have been on someone less coherent than I was (and I was not doing well), or with other problems processing crowds, noise, and roadblocks.

I thought a wheelchair attendant was the key to getting through TSA efficiently (I cannot imagine what shape I would be in after standing in line – sitting on Maggie for any length of time is not great, especially if we aren’t moving), but it isn’t, and I think, after pushing Maggie, live, in front of me through corridors, trains, and elevators, it would be easier if I just rode her, while pushing the walker in front of me. But the attendant was critical in dealing with luggage, saved some of my energy, knew exactly where to go, and would have been helpful had anything gone wrong. Six of one, half a dozen of the other – and tip money very well spent. And an extra pair of hands is nothing to be sneezed at.

But most of all, I am incredibly grateful for those who

have fought all the previous battles:

  • Making sure there is an on-board closet
  • Making sure there is a wheelchair that fits in their aisle to get a passenger who can’t walk to their seat
  • Creating the Americans with Disabilities Act and its protections
  • Creating the Air Carrier Access Act (ACAA), [which] prohibits discrimination in airline service on the basis of disability – and all its protections
  • for other bloggers like John who write about the joys and perils
  • and who provide feedback constantly on how air travel meets or falls short of these ideals for every day travelers.

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Please excuse my lack of editing this down into something shorter and more pithy – I am still not recovered, and this feels below my standards in many ways, but if I don’t get it all down now, much will lose its immediacy.

Please feel free to pass this on.

Please contribute your own thoughts and experiences and suggestions.

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Absolute right to tell doctor NO

DOES NOT APPLY TO PUBLIC HEALTH EMERGENCIES

YOUR BODY, YOUR LIFE

Even if you’re wrong.

I had a surgeon, the other day, refuse to do a minor procedure – WITHOUT EVEN MEETING ME – after talking to the nurse practitioner who examined me, because their ‘guidelines’ stated another procedure HAD TO BE DONE FIRST to rule something out.

Now before anyone gets all worried, it is a minor procedure which would improve my life significantly.

I didn’t say no – I asked for statistics.

Was told they had guidelines.

It is my very real experience in previous cases that ‘guidelines’ are often years out of date, because, as one doctor told me, “It takes time for the research to be incorporated into the guidelines.” Lots of time. A decade and a half in the previous case.

But even that is a red herring

I don’t know what the statistics are in this case, but I’m guessing MOST of the ruling-out procedures are unnecessary. As in, don’t discover anything that needs being attended to in the majority of cases.

In the case of normal reasonably-healthy people, going through a ruling-out procedure is a minor inconvenience, the loss of a day or two of their time, and an allowable use of their medical leave (if they’re working).

FOR DISABLED PEOPLE WITH NO ENERGY, EVERY procedure

carries risks and an amazingly high load of days lost and physical inconvenience, minor and major misery, time, calling in of favors, arranging…

You name it.

And it is very reasonable to 1) ask if something is STRICTLY necessary, and 2) supported by research and statistics which show the procedure is worth the enormous effort it costs that disabled person.

If a restaurant meal is $50 for one person, and $50,000 for another, it is reasonable to ask first whether the second person wishes to pay that much (this is what prices on menus are for, among other things).

Not taking that into account in medical procedures is the equivalent of saying, “If you have to ask, you can’t afford it.”

So you can’t eat it, even if you’re hungry.

The ADA Factsheet states:

The ADA requires that health care entities provide full and equal access for people with disabilities.


This can be done through:

  • Reasonable Modifications of Policies, Practices, and Procedures. Adjusting policies, practices, and procedures, if needed, to provide goods, services, facilities, privileges, advantages, or accommodations.

At the end of the fact sheet there is a feedback form. Where it asks Is the information useful to you? I checked NO.

Where asked How could the usefulness be improved? I answered:

“Reasonable modifications (or changes) to policies, practices, and procedures” does not address RECOMMENDED procedures used to RULE OUT a possibility, when it isn’t a strict requirement, would be much more difficult for the disabled person to satisfy than for a normal healthy person, and is not wanted by the disabled patient – who understands but does not consent to the recommended procedure, and is thus prevented from having a service they DO need and want.

Where asked What are the most important changes we could make? I answered:

Directly address the fact that, for disabled people, things can be MUCH more difficult to do because of the disability itself (which in my case includes very little energy in a day), and it is not fair to insist they meet the same RECOMMENDED but not STRICTLY NECESSARY requirements an able person is presented with.

And where asked What other factsheets do you think we should write? I answered:

How to lower the barriers which prevent a disabled person from getting a necessary service/procedure when these barriers are ONEROUS to a disabled person compared with an able person.

Do I expect any help from the ADA people?

Not really.

The wheels of government move slowly in the best of cases, and there will be pushback and talk about ‘lowering standards’ and interfering with ‘recommendations by doctors and medical societies.’

And, more ominously, ‘disabled people not knowing what is good for them.’

Change would likely take longer than it does to update those guidelines they are so fond of, produced by a medical society, 15 years after the research changes, to CYA those who might be sued if they don’t follow ‘standard procedures.’

I’m pretty sure they were not thinking about the EFFECT of the above on a disabled person with limited capacity – just imagining what it would be like for a person like themselves (rarely disabled) to go through the procedure, say, with an emotional support miniature horse (yes, they are specifically included, but might be excluded if not housebroken).

I’m furious because there is no recourse

This is the only version of the medical procedure I need within my medical services system.

It takes me a lot of energy to even write about it here; the actual recommended but not in my estimation strictly necessary pre-requisite to the procedure I need is one that would take over a week of ALL my time and energy to do – and I’m not sure I could manage its requirements anyway.

Finding an alternate to their clinic is beyond my capabilities.

The minor procedure would improve my life immediately but isn’t going to happen.

And I don’t think I’m going to get anywhere with the ‘feedback request’ from my medical providers – thought I may just send them this post.

As the disabled person

I should not have to fight over things like this, but should be asked my preference without having to go through the stress of fighting the surgeon who hasn’t even met me.

I have wasted enough time and energy on this already.

I hope I can continue to manage the problem.

And I wonder exactly what they think ‘informed consent‘ means when I do NOT consent.

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And, if you’re worried, I’m not taking stupid chances – I’m not planning on dying of something preventable.

Why do disabled people have to fight so hard for stupidities like this?

Why isn’t the able world asking how to help?

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Being present in the writing moment

Imaginary Circumstances

WHAT ARE YOU GOING TO DO ABOUT IT?

I need a win.

After much reflection, some of it in writing, other of it in the middle of the night, I have realized that the win, to be mine, has to come from me.

A real win is one you create yourself, the hard way, with blood, sweat, and tears. Since you EARNED it, you OWN it.

Since you created it, it can’t be taken from you (do remember your backups off site, though!).

Someone buying Pride’s Children PURGATORY – in paperback! – is a win, as is someone purchasing the ebook, or taking it out at Kindle Unlimited, especially when I haven’t done any marketing in ages. But it’s not something I have control over.

I had a recent win against Covid

As soon as the CDC said immunocompromised people would be on the short list for the early boosters, I asked my doctor AND my facility about it – to no avail. They said, “When we get it, we’ll let you know.”

But I started seeing other people with my same illnesses posting on FB about having already received the booster shot.

Regardless of how (I wouldn’t lie to get one, but don’t even know if others did, though there have been newspaper reports of lying), the key fact was availability.

So I nagged the doctor’s office, reminded them of my immune status, and they made it available. Then I arranged Medvan transportation, went and got the thing, suffered through the side effects (second day was quite flu-like, and I had more brain fog than I anticipated for the days after that), and, in another week or so, will feel I have done as much as possible to protect myself. And did NOT take that dose from someone getting their first vaccine.

So, win.

I finished a tricky chapter in Pride’s Children NETHERWORLD.

As I get toward the explosive end of NETHERWORLD, it is getting even more important to get it exactly right, because even less time separates the end of 2 from the beginning of 3 than separated the end of 1 from the beginning of 2, and every story-second counts.

Sending Chapter 35 off to my beta reader was a key step: it is the 3/4 mark in several ways, and I have been forced to make the tiny detailed decisions that make the difference NOW, and not in some writing future – ‘when I get to it.’

It’s getting harder and harder physically and mentally

I acknowledge that, and move on.

Restarting after the brain fog is always tricky, because I have to assume I’m past it before I’m sure I’m past it, and restarting is part of the process of getting past it. What I mean is that it takes a huge amount of psychic energy to restart, sort of like the difference between static and dynamic friction (starting to move a piece of furniture across carpeting is much harder than keeping it going once you start (so don’t stop!)).

Apply that pressure too early, and all it does is extend the downtime.

Wait too long, and situational depression sets in.

And there is always something else that need my limited attention ability – and seems more important just this minute.

So what?

I live with this, write with this, and have been at it for a very long time.

There are rumors on the horizon of research for long-covid that might explain another post-viral syndrome, ME/CFS’s problems, and it is possible that even after 31 years it might be helpful. Rumors – but this one has some interesting science behind it. We’ll see.

But, as the husband reminds me, even if it works it will be years before it is available, and I can’t let any of that time go to waste.

So I face the fact that there’s been a break, and get back to work.

Yesterday I took the first step:

I re-read what I have put together, in these brain-fogged days, by following process and trusting it will work as it has every time before – eventually.

And even though there’s one tiny part in the middle of the scene where a decision has to be made about an order of events, the rest is written.

And the end made me cry (actual written steps in said process: “DIG DEEPER – CRY” and “BECOME THE CHARACTER – WRITE WITH THE EMOTIONS RAW.”)

The character needs it, but I am the one with the whip, forcing change. It hurts.

Extra insight

Being present in the writing – mining my own experience: “HERE AND NOW; BEING PRESENT!”

I may work in imaginary situations, but if they don’t get treated as real, with me there, documenting as it happens, it never converts into something good.

From my Journal: “… is nice – but she needs extraordinary, and open to a degree she won’t be able to demand from him.” It is either there in someone, or it isn’t.

Voltaire said ‘the best is the enemy of the great.’

Many people think perfectionism keeps you from getting something finished and out the door and good enough.

But in writing something unique, it matters. Not that you become a perfectionist, and never get anything done, but that you not let ‘good’ or ‘good enough’ or even ‘good enough for government work’ keep you from achieving your own standards.

Because I hope my readers are the people who have those same standards.

If you are, you will know that about yourself.

THAT’s where the wins come from.

So back to the drawing board, salt mines, design board

While I still can.

Because if it’s meh, it costs me way too much to be worth it.

Chapter 36 is well started, and I am imbuing it with the frustration of writing in the middle of the challenging circumstances that are a pandemic which no one expected would last this long.

And a lot of the pain.

**********

If you look for it, something will pull you back to the task.

Can you relate?

What do you expect from your writers?

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Finagling past reality for fictional purposes

Will the real bridge AND CITY be insulted?

REALISTIC FICTION STARTS HERE

What it’s like to insert a fictional character into a historical event for the purpose of telling a story.

The basic question is unanswered: how to take over a historical event and change it.

Such as how to write a thriller with someone else as President!

So, it’s fiction, identified exactly as so in the beginning of the books, and mine to do with as I will.

I doubt someone has to get permission from the White House to change the President – or we wouldn’t have President Bartlett and The West Wing.

So I’m worried about nothing.

Except…

The general rule to changing a name has to be avoiding harm

If you are going to say something negative, it might bring a lawsuit if the named person or organization feels it affects their reputation in some way. And even if a court decides they are wrong, and you get an amazing amount of viral publicity out of this (google the Streisand Effect if you don’t remember it), it is going to take a lot of your time, effort, and money to fight such a suit – and there is no guarantee you will win.

Organizations can have in-house lawyers who eat problems like this for lunch. They will bury you easily – nothing personal – and have no mercy.

Please read books on writing and copyright, and know the legal definitions of Libel (Letter – ie, written – mnemonics mine, probably not original) and Slander (Spoken) and ask yourself, as a start, whether YOU would feel libeled or slandered if you were the subject.

If even you are uneasy, it may be easier to change the name that might get offended.

And you might have to change that to something that is significantly different in enough ways that no reasonable person would be offended (unpredictable).

Where’s this coming from?

For the purpose of NETHERWORLD, I sort of have to insult a famous movie or two, and some actors – in a minor way.

The insult consists in taking away an earned award – and awarding it to someone else, another movie.

The problem stems from everyone’s ‘knowledge’ of how Hollywood works, and what the major awards are from which organizations.

In the same way that President Bartlett is less interesting if he is Superintendent Bartlett of an unnamed or fictitious school district, an actor getting a life-changing nomination for, say, an Academy Award is more interesting than if I make up an organization called FCBM and award my character their Best Actor award.

Along with ‘The White House’ you get an amazing amount of the reader’s foreknowledge of how things work there – which saves a lot of words and explanations.

Along with ‘an Oscar’ you get the same kind of response – red carpet, photographers, exotic borrowed clothing for beautiful women… And the whole suspense thing dragged out as long as possible, followed by one winner and a lot of gracious losers who were honored to be nominated. It’s in your head already, and a writer just needs to mention a few points to trigger a full-blown award ceremony in your mind.

Why do I even bother worrying about this kind of stuff?

Well, first because I’m a worrier.

Second, because I want that identification and value from the awards. I agree with the organizations and the individuals that they are worth a great deal in a career.

Third, because the last thing I need in my state of energy and illness and retirement is some organization getting its panties in a twist because I, well, lied.

Fourth, because I hope to be famous and well-read (not synonymous) some day, I want to do it right, and not leave a mess for my heirs.

Fifth, because, as a writer, it’s my job.

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Have you had to face this choice? If so, how did you handle it? Have there been repercussions?

As a reader, have you ever wondered if the author has stepped over the line? Care to share?

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How NOT to treat disabled patients

Medical personnel providing a service.

JUST BECAUSE THEY ARE HEALTHY AND WE ARE NOT

When did things become BACKWARD???

When did THEIR time become more important than ours?

When did CLIENTS become patients?

When did their needs to be in control become more important than the clients’ rights to timely and adequate and compassionate service?

When did their convenience supersede ours?

When did taking care of disabled clients become a burden to them, an inconvenience to their mission?

When did their control become more important that our PAIN?

When did it become acceptable for them to frighten patients, to threaten them with dire consequences for not obeying instructions to the letter, to TELL them they will end up in the ER with a massive attack of something? (This has now happened twice.)

When did THEY end up with all the cards – and the self-righteous belief that they know best for OTHER people with REAL LIVES?

This is the letter I would LIKE to send to my medical services group – if I dare, once I have carefully weighed the consequences to my future treatment.

Think about that: I have to worry that they might be bothered by something I, the person responsible for paying them, might say. As nicely as I can.

First, though, I would like to say: don’t mess with a writer – they are good at nuance, both reading it and writing it. Not on the spot, of course – that’s for narcissists and sociopaths and politicians and comedians – but afterward, when they’ve had a chance to think.

And to realize what just happened.

And rewrite what you think just happened into the correct narrative that takes the CLIENT into account.

Except rewriting the narrative created by the thoughtless ‘professional’ requires 1) rereading it (I won’t – too negative), and 2) putting in an enormous amount of my own time – knowing it probably won’t work. Or change anything.

THE LETTER TO MEDICAL PERSONNEL AT XXXXX which I may never send.

Because I need some kind of medical care, and all of these are similar in that they think they know it all, and they OVERWHELM you.

My mind keeps nagging about the letter I should write to my medical providers about energy, visits to specialists, and fear-mongering. Which was applied to me, a disabled person, at the end of a too-long-for-a-disabled-person day.


And the tone of the after-visit summary took my breath away – and made no mention of or accommodation for that disability which caused so many of the problems.
Bullying a disabled person is NOT nice.

I will NOT have the procedure unless I decide it is necessary, there are several more worrying symptoms, and they don’t respond immediately to medication.
And do NOT appreciate how I was treated so cavalierly.

I need to write the letter so it appears in my medical record, and I can point to it, but I don’t expect it to have any effect on anyone there.

Do NOT treat disabled people the way you treat normal people – we can’t take it.

And no, it doesn’t NECESSARILY help to bring someone else along. Then I have to deal with THEM, too.

The calculus of what I can take vs. what I need is ongoing: don’t assume, ASK.

And more than asking, could you make a climate where I will think of asking myself, EVEN when exhausted?

Thank you.

CLIENT (person who pays the bills)

The above is not coherent – I’m still going to let it stand, because the incoherence is generated by the system.

I’ve let this one stew for almost a month, and I’m still angry. I was going to just let it drop, leave the unfinished post among the almost 100 draft posts I never finished.

Not naming names – and I’ve decided it isn’t SAFE for me to let them know what I really think, so I’ll keep tweaking the interactions (as in my previous state – which was as bad or worse) instead of taking them head on.

Other options to minimize the problems

One is to do as much as possible via video visits; those are usually on time, one-on-one because the provider isn’t popping in and out or pawning you off on a nurse.

Another – based on my last visit to another city for treatment – is to make sure you have done the paperwork part of a visit SEPARATELY via video BEFORE the in-person appointment. I find it a major problem to have filled all the paperwork before the visit, and to be grilled over every single thing in my medical history again anyway.

I will explain that it is very difficult for me to do BOTH in a single visit – and, by the time I get the service, I am exhausted and frazzled and not being as coherent as I tried to prepare to be.

LEAVE the minute it gets to where I can’t keep going. I keep trying to respect THEIR time, at the cost of trying to continue to talk and even be awake and coherent when things go on too long. Going back is not a great option, but maybe I can finish by video.

Stand up for myself in some small way each time.

Say, “This is not helpful.”

Risk being labeled difficult.

Complain to higher management – with specifics (respectfully – that writer nuance).

Suggestions?

Because the stress of doctor visits has gotten to the point that all I want to do is avoid them.

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Stubborn opinionated determined author at work

You can’t guarantee the results

Isn’t ‘effort’ the same thing as ‘work?

After I wrote the above, I realized that I think of them separately (personal choice), with effort being the whole mental atmosphere surrounding what writers do – from paying attention to things other people never notice, including information on publicity, covers, and selling – and work being actually sitting down and turning that attitude into things such as a finished ad or a description that rocks or any number of other ‘deliverables.’

WORK‘, of course, includes the writing itself, the finished words on the page of a pdf you are about to upload to Amazon or others.

And know it’s the best version of the story you are able to provide that mysterious elusive creature, the Reader.

After that, Amazon takes over and supplies copies of the WORK to those who pay for it.

For many of us, Amazon is currently publisher and distributor, for a hefty portion of the rewards (30% for ebooks, more for print books). I am currently okay with that. Because that equation is far worse on the traditional publishing side, and many of the benefits to using them (editing, covers, advertising, promotion, reasonable advances, royalties) are on the path of the Dodo bird.

Writing successful fiction requires two additional things:

Finding your potential readers, and

Getting them to try your writing.

If you haven’t truly written a good book that readers would buy if they only knew about you, YOU’RE WASTING YOUR TIME when you promote and advertise and stand on your head to do PR. You may fool some of the people some of the time, but that is rarely a recipe for commercial success.

Indeed, after reading some authors’ latest ‘work’, I know I will never read another from them.

But the whole discoverability part of writing is hard, tricky, and requires the one thing I don’t have: energy and the capacity for endless self-promotion.

If you have written ‘a good book’ for a segment of the population

the satisfied readers should be clamoring for more.

If you have more (backlist), they have a lot to discover and enjoy.

If not, well, keep working. And some readers will never get that pleasure from you again, but it won’t be your fault, if you’ just keep truckin’.’

And hope for some luck, or ‘Here a miracle occurs,’ or going viral, or catching someone’s eye…

Some of us will simply have to hope for an afterlife, and wait to ask Margaret Mitchell what happened to Scarlett. Assuming she still cares – the afterlife runs on different rules, I believe.

And now I’m going off to nap, followed by keeping my nose to my particular grindstone.

I do so want to finish. It’s coming nicely. And every time the idea that life might be easier if I spent it entertaining myself instead of torturing myself with imaginary people, I have managed to fight that attitude off.

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What are the things in your life that you will never give up on?

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The value I’m offering MY Readers

You’ll never get it back

A blogger’s question made me think:

HOW MUCH TIME do my potential readers spend looking for SOMETHING, ANYTHING interesting to read before finding a few possibles,

and

HOW MUCH MORE TIME do they spend starting and then giving up on books that pass their initial selection process – BEFORE they find one they like and actually enjoy reading to the end?

Readers may have preferences, but the good ones, the educated literate WHALE readers – the ones who read a lot of books, hard books, complex books, and often buy them in hardcover (which I will produce when I have 1) a lot of time, or 2) Amazon lets me into their beta hardcover program), and then RECOMMEND them to their friends – are often happy to just read ‘a good book.’

Because their appetites are not satisfied – no matter how many books are on their To Be Read piles.

They are not looking for ‘more of the same vampire books.’ Or ‘the latest James Patterson book.’ Or another ‘clean Romance.’

They are let down by what they read (have you seen how many NEGATIVE reviews there are on books such as The Goldfinch? They won’t all be people who can’t handle the complexity and bought it primarily as a coffeetable book!).

They want what writers are counseled to produce: a good book

So it got me to thinking about my writing, and what I am trying to produce, a good story, a book that is worth the time invested in reading it, a book which will make the same Reader want the next in the trilogy.

It’s easier for me to vet my potential Readers than for me to try to please everyone (an impossibility).

So I’m going to try to QUANTIFY the ineffable

There’s an example: If you are potentially MY Reader, either you already know what ‘ineffable’ means, or you will figure it out from context and a dictionary – because you like words and enjoy pinning down ones you’ve seen before but don’t remember exactly what they mean. And either way, it will give you PLEASURE just sitting there on your page.

If ‘ineffable’ appearing in your reading material is annoying because you think the writer’s being elitist or you’re done with SAT words, your are NOT my potential Reader.

Because ineffable came to my mind as what I wanted to say (and I did a quick check to make sure I didn’t have it mixed up with something else – fatal to the point I’m trying to make). Something unquantifiable because it is big and complex: how to help Readers know the value of my work – to them, the only people they are really interested in satisfying.

Everything else is miscommunication.

And I’m going to quantify it in a very me way

I’m going to make a list of books which have influenced Pride’s Children by being favorites of mine still years after I’ve read most of them, and why.

I’ve done this on Goodreads when carefully looking for potential reviewers, using the Compare books feature, especially if they’ve reviewed and I can see if our reasons for loving a book are compatible.

All you have to do to find out if you are potentially a Reader of my fiction is to see if several of these hit you in similar ways.

For the actual writing part – because we can love the same books without me being able to produce a coherent sentence in a similar style – I will make my standard recommendation: go to Amazon, to the print version – because my formatting is part of how I want to write. The ebook is available and I love it, too, but ebooks have reflowable text on purpose so you can change fonts and sizes to suit you; great for reading, not so great for seeing if you like everything about the author.

  1. Read – but don’t get hung up on – the description; these are always being tweaked to occupy the very limited real estate on the book’s page. It is an indicator, not the definitive reason for choosing or not choosing a book.
  2. Read some of the reviews. I’d choose several of the top reviews (most of the longer 5* ones from older men) and maybe a couple of the few negative ones (you’ll know what I mean if my writing will appeal to you). Go for the long ones – but not the ones which summarize and ruin the plot: you’re looking for reviewers like you.
  3. Read a few pages of the Look Inside! – by the end of the third scene you will have met all the point of view characters, by the end of the first chapter or two you will have picked up the as-needed style of alternating them, and by the end of the sample, if not much sooner, you will know if – in your opinion – I can write.
  4. Ten or twenty minutes spent will tell you all you need to know. And you should spend that on a potential book; Pride’s Children PURGATORY will take you a good while to read.

That’s it: checkout my list of influencers and read a bit of the actual writing, and then, if you’re one of us, buy in your favorite format and get to reading.

I can guarantee it’s a good story; after all, it has occupied all my usable writing time for the past twenty-one years, I’m almost finished with volume 2 (which ends well but still leaves you wanting more), and volume 3 is completely plotted and exists in rough draft form (so you know I know exactly where we’re going).

What kind of a good story?

Well, here is a partial list of the themes woven in there somewhere:

  • Family matters
  • Love is based on trust
  • Children matter – and must be protected
  • Beliefs are important
  • Beliefs lead to action
  • Right beliefs lead to right action
  • Dignity matters
  • Good will prevail
  • Life throws stuff at you – how you handle it is who you are
  • You can’t stay married to someone who doesn’t want you
  • Some people are objectively better than others
  • Integrity matters
  • Evil exists – and can’t be excused
  • Love transcends age
  • We have a capacity for intense love: of a character. Of an actor. Of a story.
  • Disability themes: how common it is, the intrinsic value of the person who is disabled, and the empathy I want developed in readers and the world.

And the overall theme: How you live your life PROVES what you believe. And believe in.

Now for those influencer books:

(you will want to have read – and liked or have been affected by – at least several):

  • Dune (plus Dune Messiah and Children of Dune)
  • Jane Eyre
  • Wuthering Heights
  • On the Beach, Trustee from the Toolroom
  • The Thorn Birds
  • The Left Hand of Darkness, Roccannon’s World, Planet of Exile
  • Leviathan’s Deep
  • The Moon is a Harsh Mistress
  • Great Expectations
  • Frankenstein
  • Strong Poison, Have his Carcase, Gaudy Night, Busman’s Honeymoon, Talboys
  • Rebecca
  • Exodus
  • Lucifer’s Hammer
  • A Tale of Two Cities
  • Dr. Zhivago
  • The Exorcist
  • The Dying of the Light (also named After the Festival), A Song for Lya
  • Ender’s Game
  • Huckleberry Finn
  • The Foundation trilogy
  • The Crystal Cave, The Last Enchantment
  • The Complete Sherlock Holmes
  • Brave New World
  • The Hobbit, Lord of the Rings
  • The Spy Who Came in from the Cold, Tinker Tailor Soldier Spy
  • Black Beauty
  • Silas Marner
  • Snow Falling on Cedars, Our Lady of the Forest
  • Alice’s Adventures in Wonderland, Through the Looking Glass
  • The Handmaid’s Tale
  • The Three Musketeers
  • To Kill a Mockingbird
  • GWTW
  • Way Station
  • A Canticle for Leibowitz
  • The Name of the Rose

A good serving of these plus a familiarity with Shakespeare and the Bible.

That’s basically it

Spend a bit of time vetting your reading material – you will be spending hours of your life you will never get back – and then settle in to a nice long encounter.

You may also pray for good health for the writer; in this case, she needs to be semi-functional to be able to write at all.

IF you are persuaded, leave a comment saying why – feedback is crucial to writers, especially if you want more work from them.

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