Tag Archives: CFS

Scary time of absent brain

The future is boundless; our life, not so much

Not intending to be dire or apocalyptic – but often being able to write a blog post, almost any kind of a post, signals, for me, the end of a difficult period where the brain power needed to do almost anything is just not there, and I’m not sure if it’s the waxing and waning of ME/CFS – or the beginning of the end of being able to write.

Those who know me, or have been following for a while, know how close to the edge of completely non-functional I live. A little bit worse, and no creative juices flow at all.

I wait it out, deal with whatever is causing additional problems beyond chronic illness and disability, pick up where I left off when I can function a bit again.

THERE IS NO POINT

in wasting any of my energy in railing against my fate – it doesn’t help, and doesn’t make me feel better. [Note: my brain supplied ‘railing’ as the appropriate form of protest against things bigger than I can manage. I was terrified for a few seconds when Google only supplied ‘fencing’ as a definition, until I insisted further and ‘rail’ as a verb came up. Phew!]

It is what it is until they figure it out, this ME/CFS, come up with a definitive diagnostic, find the mechanism(s) that cause it, find a treatment, find a CURE!

Today I had an interesting interaction with someone online who claims 1) to have had it, and 2) to have a treatment protocol that cured him. I had the strength of character to tell him I was glad for him, and not interested in arguing with someone online who has the ‘solution of the week.’ And to please stop writing to me.

As we tell new people, “Hope it’s something else – something that DOES have a diagnostic and a treatment.” If something actually cured someone, it is awfully likely they didn’t have what I have in the first place, but something with similar symptoms – and a CURE!/treatment/prognosis.

It’s vanishingly likely that he has something that can help, and I don’t have the bandwidth for another savior with a solution. I’ve been at this nonsense for 32 years.

There is a finite (ie, non-zero) possibility that now that they’re pouring money into long covid research that they will actually look enough to find a real solution. That’s where my hopes are being pinned; ask me in a couple of years if anything panned out – because governments finally realized that 10-30% of the long covid survivors were, essentially, getting ME/CFS and, more importantly to governments, turning from productive working tax-paying citizens into sick citizens needing the disability benefits they have been promised since they started working. Ie, it will COST the governments, and they may figure out a cure is finally worth putting some money into research, instead of telling people it’s all in their heads.

Hope I’m still around.

More than that, hope it works for people who are not recently ill – not that I begrudge the newbies, but I want to be at the head of the line.

Hey! Look! I’m producing coherent (okay, you may argue about that) sentences!

It’s been a rough time since I announced I had finished writing Netherworld, and now that I have finished proofing the text.

The plan was to format and then to get the cover out of my head and onto a page. It’s been weeks. Sometimes I just go read the end, fall in love with it all over again, and go back to sitting staring at the screen.

Because love hasn’t been translating into action.

So far it’s just par for the course, and I expect it will resolve itself, and it won’t hurt to get the new Airbook(name?) from Apple with the M2 thingamabob my eldest daughter says is good – not having the computer question resolved – should I format and cover on the old machine, or wait for the new one and bite the bullet and update my Scrivener which may have some of the things I needed that the previous version didn’t have?

But I can’t believe how much that tiny obstacle in my path stopped me from making ANY progress.

Physical problems have been the stumbling block

I don’t want to go into details, yet, on a public blog, but my already-strained-to-the-limit body and mind have had a huge task added to keeping us all going, it has affected sleep, pain, and comfort to an incredible degree, and taken every speck of energy I had.

Finding a solution took energy I didn’t have, and going outside my medical system, and I’m glad I did – but it won’t be over for a while, and it isn’t going to be any fun. Until AFTER September, and then there will be recovery.

And I won’t have any relief from taking care of the problem constantly unless I am very, very, VERY lucky next week.

I’m sleeping in 1-2 hour chunks. That should account for the feeling of doom – sleep deprivation is classified as torture.

So I shouldn’t worry, right?

Except that there’s always that one last straw, the one that breaks the badger’s back, and I wonder, when I have the brain to wonder, whether this is it, and hope it isn’t, because I’m not finished writing quite yet.

If I am, it isn’t because I quit. I was because I was wrestled to a standstill by Reality, which always wins.

Meanwhile, putting words on page has given me a little much-needed hope again, and getting the news my computer situation might be resolving has given me a goal in a decision I kept going back and forth on (wait – or go ahead on familiar if not completely adequate technology – wait -…).

Thinking outside the box hasn’t worked yet

but I am vastly encouraged by the fact that I figured out how to, initiated it, was fortunate enough to find a listening ear (after several tries), and it may work much better than what I have had (nothing). And in my weakened state, no less!

I’m very proud of myself for trying – hope it works out.

So there – and mysterious. The women who read this blog and are older than 50 and/or have had children may have a clue; the rest of you really shouldn’t want to know. It’s grotty and embarrassing and against all the modesty my middle-class Mexican upbringing instilled deep, courtesy of my beloved Mother.

If I navigate it successfully, you may ask privately, and I’ll name the Beast.

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As soon as the fog clears a bit more, and/or the new laptop is here and mastered, I will go doggedly right back to working on the publishing of NETHERWORLD, instead of just going to the file, re-reading the end, and crying into my beer because I love it so much.

I’m just waiting for two good friends to let me know if they liked it, too, to feel a whole lot better.

And if you like to be in at that stage, my contact information is in the About. I could use a few more readers/reviewers who are familiar with PURGATORY, and need to keep going.

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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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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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Preparation and then things just click?

Hot air baloon at sunset; text: sailing off into the sunset, Alicia Butcher EhrhardtWHETHER YOU’RE READY OR NOT

And we are so definitely NOT ready.

But the last flooring was installed, the staging ladies have done their thing, and our real estate agent is now our real estate agent (all the advice up front doesn’t count until you sign on the dotted line – at which point all kinds of things start happening, like open houses and a lock box on your front door…).

We haven’t recovered from the trip.

We have no place for our stuff – the stuff we need to function as inhabitants of a house (where is my skillet, and how will I make eggs when the gas isn’t reconnected yet?). Which may be a problem, as the period between when you put a house ‘on the market,’ and the time when you are removing your last belongings so you can hand over the keys, is an unknown variable.

I don’t know where anything is

It happens to everyone, but it is especially hard to deal with when you have ME/CFS and daily brain fog: and now it’s far worse because some of the stuff in this house was put away by someone other than me, in a hurry, and without labeling either the box or the corresponding card in my card file. Or worse still, labeled as ‘miscellaneous.’ Aargh!

I located a few of the critical items in very odd places. Not sure I have everything I need, as distinct from the comforts, even yet.

And the dryer vent, taped by the painter, is loose – so I’m not sure I can do laundry (I’m living with the absolute minimum amount of clothes out).

Everything is to be kept tidy

And by ‘tidy’ we mean the way the staging ladies left it (a model home look), or restorable to that condition on short warning, when someone uses the system to ‘book an appointment.’ Aargh!

Meanwhile, we do have to be allowed to eat. Other Half and his good friend are down there trying to reconnect, safely, the gas to the stove.

But the forever home may be available soon

Don’t know exactly when, as they actually have to get everything they asked us for, and decide whether they want us. It is possible for them to reject us.

And it is possible for us to be legally required to leave our ex-home because it belongs to someone else after all these years, before we have a place to land.

It’s a first-world type problem – and I’m not whining – except complicated by my limitations. Residence Inn America for two months? We probably could survive. Rent or buy an RV? Ditto. I think.

So we’re adjusting.

Again.

And I’m marveling that I’m still standing – and taking a nap every chance I get so that I can be coherent for the next crisis event. Such as talking to the people at our brokerage (Vanguard) and being able to satisfy them that I’m me, so we could transfer money. By phone. Since the money has actually been received at the other end by the right people, I did it.

A bit nerve-wracking: you will be asked a series of questions, based on (?) publicly available information, and if you miss one, you’ll have to go the long route of being identified some other way. I’m still chuckling over one question about a boat we owned. And wondering where husband hid it all these years.

I love Vanguard. They get things done, and always have alternatives. I am currently furious at one of our banks for the way they made a decision (which led to the nerve-wracking phone ID). And at the other for the fraught way they handle wire transfers, as if you were a criminal actively trying to circumvent laws. Why is it that the people the laws are intended to protect always feel the brunt, while the people who should be caught and punished never even feel a thing? Being law-abiding is becoming more difficult every day.

There is a For Sale sign on my yard. After 37 years.

Life is interesting, but I’m finding the watershed point was signing those papers, and I’m strangely free.

That and the deposit wire-transfer going through on the same day is… unexpected.

Off to the Gray Havens.


 

BEAUTIFUL BUT BITTERSWEET

This is the view from the balcony.

The water is SO blue.

We came here for the kids, and it has been a great gift to see our three plus one significant other – for meals, for pool time, for watching Moana last night with them all in a pile like puppies.

But you can probably figure out it isn’t as easy as I would like!

There is a lot of walking (for me).

There is seeing middle son spend seven hours biking up, and then down, 10,000 ft., using enough energy in one day to fuel me for a year.

There is me being unable to walk as far as the ocean – so I haven’t been in it. They say it is warmer than the pools – which have been ‘heated,’ but consistently too cool. And the hot tubs, except for one, late at night, too hot to stay in for very long, with an annoying sign that says the elderly shouldn’t use them! Bollocks to that.

Hawaii apparently doesn’t have all-inclusive resorts, so fooding has been more complicated, and the five of them (four plus husband) have had to go shopping several times.

Why am I complaining?

Because I’m pretty useless for most of the tasks. My chef offspring have been feeding me – we still respect the matriarch enough to keep her around.

But it is mildly annoying.

And I realize how marginal I am when it comes to taking care of myself in a strange place, I who used to take care of three little ones in strange places, more or less (I’ve had ME/CFS since before the third one – who is now the designated driver on the rental car!).

It galls a bit.

I don’t care.

It is wonderful to see their bonds still intact, and strengthened by the pleasure of being together, my far-flung kiddies. This is one of my prime concerns – so many people don’t know their own adult siblings all that well any more.

I had a lovely talk with a woman from Chicago; she said the idea – get together once a year with everyone for a vacation (not an original idea) – was brilliant. I told her SOMEONE has to initiate it – or it won’t happen.

Some families have a beach house of a cabin somewhere – that probably works, but I’ve heard stories of very uncomfortable accommodations, especially as little ones come along. I think using a resort is better.

The other part is making the three of them pick the dates – so they have to work together before – and the place. That way it isn’t foisted on them by Mom and Dad.

I suggested that it NOT be around the holidays – then they’ll be able to go to their in-laws for Christmas – when travel is expensive and complicated.

They picked May. It would have been perfect had we not been right in the middle of putting the house on the market, but even that has had its good side: the painter has repainted our interior while we are not there!

So hello from Maui

And we’re leaving tomorrow. I did note it took me until this morning to wake up feeling adjusted to the time zone.

Oh, well.

Just look at the picture: it’s gorgeous here.


Reminder: royalties and page reads for Pride’s Children (above right) in May being donated to #MEAction for advocacy for us ME/CFS types – sorely needed. Thanks for all who have participated.


 

Boosting Jennie Spotila’s post on dancing

Little girl in bikini dancing on beach. Text: Dance. It's good for you. Alicia Butcher Ehrhardt

TODAY IS ME AWARENESS DAY

Jennie uses her inability to dance as a metaphor – the entire post (and her blog in general) is always worth reading.

This excerpt chilled me, because we’ve been TOLD, by the NIH (National Institutes for Health) and its director who has been ignoring us for decades, Dr. Francis Collins, that we’ve getting DOUBLE the research money this year that we had last year:

If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.

ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.

NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.

DOUBLE OF NOTHING IS NOTHING. Remember that – it’s an old joke.

Please read her whole, excellent post.

Dancing is a human right

No one should stop you from moving except yourself (and we all had that desire to move as small children, so ask where it went, if it’s gone).

Moving freely in your body, with energy, is a human right (and we’d be attached to rocks if we didn’t have it). Except I can’t any more, and haven’t had that energy in a long time.

I gave my remaining love of dance to my character, Kary, in Pride’s Children, because I know what it is to dance for a short while in my kitchen – something I lost years ago to both the ME/CFS and my back problems – and miss daily.

The end of Chapter 16 in Pride’s Children: PURGATORY (Andrew comes back unexpectedly to pick up a script):

Dance excerpt 1, PC1, Chapter 16

Dance excerpt 2, PC1, Chapter 16

I kind of like this one.

I REALLY miss dancing.

Shall we dance?


Remember, my royalties for May go to the fight against ignorance and lack of research.


Thanks again to Stencil, for giving me the free image (the words are mine) of a little girl dancing on the beach. It was perfect.

May 12 – ME/CFS Awareness Day – again

Picture of dog with its tongue out. Text: No treats for me. ME/CFS has stolen all my energy. Alicia Butcher Ehrhardt

AND AGAIN THERE ISN’T ENOUGH ENERGY TO GO

I am represented by my shoes. Thanks to the people who take the shoes, label them, place them where people stop and look and ask: my shoes represent one of the #MillionsMissing. Me.

I am represented by my fiction. Specifically, ALL my royalties for May 2018 will go to support #MEAction‘s fundraiser – because they are being activists for all of us who have ME/CFS and need medical recognition, research, and training. I’m not delusional, trust me. I’m just sick. Lots of us are. You can ignore us – and make us even more miserable than we already are. But you can’t make us go away and not be sick, and, like AIDS patients before us, we are holding you accountable for this misery – because those wo do nothing when they could are enablers of the misery.

I am represented by my blogs. This one, and Pride’s Children’s blog – where there is a new post! About me learning to use a new marketing book which may help me find the people who will read and love and be waiting for the next book in the trilogy (coming – as fast as I possibly can – this year, or next at the latest). A curious thing (to me) has been a whole bunch of people signing up to follow it and liking the posts – without ever going to that site. I suspect the word ‘marketing’ kicked some bots into gear, but traffic is traffic. It’s difficult for me to market when the people who have left 5* reviews range from young women in their 20s to older men in their 80s. I’m greedy. I want more of you.

I am represented by my Patreon, where at least one lovely patron and I are having very interesting discussions – and the patrons get to read Pride’s Children: NETHERWORLD before anyone else. Curious? Drop by and read the free public posts – and ask yourself if you can REALLY wait another year…

I’m represented by my Facebook page, which is for RL friends and family, and a few extras (it’s not all that exciting, though I have boosted a few posts).

But I’m not represented by me. 😦 Because, as happened today, the spoons went to something silly and necessary that jumped to the top of the To Do list right during one of my four naps, and had to be done that minute. Today’s energy, and tomorrow’s, are used up already. And Sunday, I already know I won’t be able to go sing – there is nothing in the energy bank to allow me to do what I want to do. And I know perfectly well I’ll make myself much worse if I foolishly try. No problem – I can do it, go sing – but the cost will be days of staring at the wall, and I can’t afford them.

Thanks to all who are doing something and going to an event for May 12, ME/CFS Awareness Day – again, since we’re still not getting anywhere, and not only are we still sick, but new ones join us every day. I’ll be there in spirit. Spirits are invisible.

Think ahead about accessibility in housing

Long flight of steps. Silhouette of human wearing pants. Test: Too many stairs. Think Accessibility. Someone will thank you. Alicia Butcher Ehrhardt

NEVER THOUGHT I’D HAVE TROUBLE WITH STAIRS

And it’s a bit of an exaggeration to think that every single home in the nation should be accessible to people with physical disabilities.

Or is it?

Odd development.

We bought this house when we were both young and childless because it was the ONLY home left in this particular subdivision, the ONLY one with mature trees that the real estate agents showed us, the ONLY one on a quiet cul-de-sac.

I fell in love with the trees.

New construction in New Jersey tends to be on former farmland. That’s because of the tax structure: farmland is encouraged, so vast tracts of land in the Garden State are technically farms, and something is planted often enough to keep this tax designation. Not for me to understand or go into the details of that.

But every once in a while, someone who needs money (probably), maybe as a result of a death in the family and land passing to a younger generation, or need for more McMansions, or whatever, sells a plot of land which is converted to residential and immediately turned into mushrooms: houses dotting the land with no trees around them.

Many of the young urban professionals who then move to the new suburbs are a bit cash-challenged, and they do minimum landscaping, so that years later the developments STILL look like blank canvases – with a few huge houses sticking up, one per acre or so, with a few bushes around the base of each.

Free exercise?

Our house is a split level. With the framed-in attic, it had FIVE levels, joined by FOUR staircases of 7, 7, 7, and 5 steps. We eventually turned that attic level into a fourth bedroom and bath – occupied first by the nanny for the two oldest, then me with the youngest after a couple of problems made it desirable for her and I to sleep together for the first year. After that, the oldest child still at home got the privacy and status of the aerie. Each in turn.

I noticed, even back before kids, that we tended to live on two of the levels – living room/dining room/kitchen plus main bedroom/master bath – and I was already limiting the number of times I’d go down to the basement.

Then I had the first two, and then I got ME/CFS, and things got rapidly worse, and then the third child…

For a healthy young mother who needs lots of exercise, and has a lot of energy, maybe wasting a bunch of it on stairs makes sense. Every time a baby needs changing, a toddler someone to help at the potty, a kid to be reminded of doing homework, a husband or wife to be called to dinner – stairs.

As a nation, we don’t plan ahead for accessibility

Grab bars in showers, clearly helpful for anyone from a young child learning to shower on her own to a mother recovering from a C-section – should be required in every tub/shower enclosure. They aren’t. I have been using the shower door’s towel rack for this for decades, always conscious that it couldn’t take real stress – because it wasn’t designed for that.

Floor plans with hallways wide enough for a wheelchair aren’t built – who could possibly need them?

MOST homes become a trap for the disabled. I can’t tell you the number of days, when the back pain from botched back surgery in 2007 was particularly bad, that I literally crawled up those flights.

And as vertical stability even on good days has become a challenge, how many times I come down one of those short flights backward because one hand holds a few things, while the better right hand grabs the rail – because we have them only on one side of the stairs.

My husband’s mom hard a hard time getting up to the living room as she aged. Was that part of the reason they didn’t come often? I hope not.

Guests from a singing group had the same problem – as we all aged, some had a very hard time (at all the homes in the group), even those four or five steps to a front door became problematic.

So, at a time when some people would like to age in place a little longer, that much-loved home becomes dangerous.

The worst part?

When you go to sell a house, often to much younger people, accessibility features that are too obvious say ‘old’ and ‘dated’ and ‘belongs to someone I don’t want to think about becoming’ – and are literally detriments to a sale.

No one wants to think ahead.

The thought of needing accessibility features some time in the future scares off buyers.

Ours aren’t too obvious – we never installed those grab bars, or added the second handrail on each section of stairs, and don’t have wider hallways (it’s a tract house, lovingly landscaped over the years) or an accessible kitchen.

I’ve never had the energy to insist on making my own home more accessible and convenient for me, since I don’t absolutely have to have a wheelchair yet, and can get around on the bad days by hanging on to things.

Do I want to stay in this house?

We’re past that point now, as I also don’t want to be stuck in this climate, and we don’t need the two extra bedrooms any more, and more and more of my older friends have either moved away or don’t get out much either.

The kids are flown each to a different State of the Union. And as far from each other as possible.

But it’s never really been an option to stay.

We moved in in 1981!

And will move out in 2018.

I don’t have a choice: I have been defeated for a long time. I just didn’t want to admit it. Or rather, I did – at least five years ago – but it’s taken this long (and some life events) to get the husband fully committed to the idea of transitioning into a much smaller apartment in a retirement community with facilities – such as a pool, gym, and daily dinner. And one with, we hope, no accessibility problems.

This time I’m thinking it through, all the way to the possible wheelchair.

There’s a reason old homesteads used to have a suite built on the main floor – the ‘southwest corner’ – in advance of needing it, for a widowed parent or maiden aunt. Good view, warmth – and no stairs.

It’s about time.

Have you thought about accessibility?


Thanks, as usual, to Stencil for the use of up to ten free graphics a month. It’s been fun to pick an image, think up some words, play with their text features, and insert at the beginning something that ‘goes with’ what the post is about.


 

Donating royalties for May 2018 to #MEACTION

Computer, coffee, phone. Text: May 2018 royalties for ME/CFS, Put us back to work, Please, Alicia Butcher Ehrhardt

May is ME/CFS Awareness Month – the big day is MAY 12th.


ALL  PRIDE’S CHILDREN:PURGATORY ROYALTIES DONATED TO THE #MEACTION FUNDRAISER FOR MAY 2018.

This is my contribution to the campaign – as a writer.


Please pop over to Pride’s Children’s blog if you haven’t seen the post (same as the Facebook post) – and consider getting or gifting a copy – this disease has millions of us WORLDWIDE missing from life. We’d love to get back to work!


 

Flexibility is worth working through pain

Setting sun behind woman leaping. What you give to keep yourself in shape? Alicia Butcherr EhrhardtIT IS HARD WORK TO STAY FLEXIBLE

To keep writing

Over this past week, while struggling with the chore of de-junking a house, divesting myself of decades worth of stuff, and getting my singing in, I have been physically exhausted (even though I direct the work, not do it).

The sleep I’ve been getting has been fractured, erratic, odd – and never deep enough.

So, the perfect time in life to take on another major task?

So, of course I did

As I mentioned in the previous post, I started a Patreon page for Pride’s Children; NETHERWORLD, Book 2 in the trilogy (see button on sidebar – I figured out how to have one with a link!!!).

Because, among other things, I realized that the moving tasks are ordinary. And while they need to be done, and every detail has to be supervised by me, and there has been a huge emotional content (you try capturing in a few scrapbooks about twenty years worth of homeschooling three kids!), it wasn’t hard, or tricky, or complicated, or complex, or even challenging.

Ordinary stuff. Every homeschooling family has tons of stuff to dispose of. Every family moving out of a long-time home has a lot of stuff.

But there is no great intelligence or problem-solving ability necessary; in fact, that gets in the way because methodical and utilitarian are the words that describe the process. Just do it. Make a decision: box it for the move, declare it object unnecessary, give it away.

What keeps your brain usable as you get older?

I’m convinced it is USING that brain, not letting it get fuzzy and lazy and go easy.

Starting a page on another platform for promoting your work – that’s complex and challenging. Patreon doesn’t make it particularly easy – I find a lot of applications which are developed for online and Windows use somehow seem to lack menus and a sitemap which works and guides that are more than basic – and I had to keep poking to find even rudimentary details. Such as which is the best way to get your money out (when you get any).

Inexplicably, for Direct Deposit via Stripe,  the payment page gave you a form to fill out which required banking information AND your Social Security number, but which didn’t mention fees.

And for Paypal, it listed some fees which could reduce your take.

Thus giving you the impression that even though Stripe usually costs money, the direct deposit part didn’t. Making it better than Paypal.

Stuff like that. (It’s not true, BTW. But you have to figure it out based on the amount being transferred, by going to the two payment methods’ sites and doing the mental work.)

Digging and logical thinking

It would be nice to have no fees to deposit your money earned into your bank account – Amazon does it, right? Amazon’s fees are probably included in their calculation of their cut – they just don’t break it out.

Doing this kind of mental work, hard, new, in a different and unintuitive (for me) format is worth doing – because it keeps me flexible – for the next thing that comes along.

I’ve found myself getting lackadaisical about learning tasks like how to control the network of TV and Netflix and Amazon video and Youtube – the spouse clicks thousands of times a night while organizing a couple of hours of something to watch. I let him do it, most of the time.

But watching TV is not my profession. Writing is. And I take it seriously for now, and as long as I can do it. And it changes continuously, but no one is going to make it easier for me.

So I charge in, do the work, maintain the flexibility to attempt and conquer the next challenge, and revel in the ability to still master the new.

It’s exhausting – and necessary.

And then there’s all the daily physical exercise

Which keeps the physical pain under some sort of rough control, so I neither take too much additional medication nor sit here in a haze of pain, unable to think.

But physical pain is boring. Not intellectually challenging.

So I’m not talking about it.

But I gotta get my mental ‘steps’ in, and push that to the limit.


Do you find yourself slacking off when there’s something new to be learned? Are you conscious that you’re passing up opportunities to keep the ol’ cerebrum functioning? Are you making an actual choice?


Don’t forget to visit the Patreon page  – the first chapter’s on me (pages are public), and you don’t even need to figure out how to create an account, and then have to close it. Feedback welcome, whether or not you will use the platform to read.


 

The Discipline of the Long-Distance Writer

SITTING HERE – RESTARTING MY BRAIN

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

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

Everything about Cary Tennis’ aphorism:

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

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

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

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

Priorities

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

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

One thing at a time!

Use what you have in your writing

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

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

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

It is another of those realities which cannot be ignored.

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

I always come back

So far. Eventually.

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

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

The immediate projects are competing fiercely

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

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

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

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

The long-term move is back on the horizon

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

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

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

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

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

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

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

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

How’s your winter going?

The Greatest Generation is now gone

AND, UNTIL IT’S YOUR TURN, LIVE

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

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

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

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

Making new traditions

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

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

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

So be it.

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

Now to focus on the two of us

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

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

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

The last of the big brain-sucking tasks,

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

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

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

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

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

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

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

I’m a writer now, and still working

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

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

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

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

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

There is so much yet to learn

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

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

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

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

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

Writers have only so many hours

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

OF 24 HOURS IN A DAY, 2 OR 3 OF THEM ARE GOOD

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

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

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

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

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

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

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

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

So, picking well is crucial. And hard.

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

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

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

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

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

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

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

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

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

I finally got one step further on this task.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s the update.

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

But I am hopeful.

And I am WRITING many more days than not.

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

Peace to all of you. How are you?

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


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

Tahiro Mizuki,
trans. by R. Heath


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

 

 

 

 

 

 

 

 

 

Structure and me we’re old buddies

STRUCTURE – FREEING, NOT CONFINING

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

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

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

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

Structure is how I manage to write

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

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

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

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

The three-act structure, revisited

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

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

As for me, extreme plotter that I am

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

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

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

Etc.

Getting the whole to hang together

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

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

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

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

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

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


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

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


 

Writing in a niche market is fraught

AND CAN BE VERY HARD ON THE EGO

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

What is the niche? INDIE NON-GENRE fiction

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

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

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

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

I have not. Yet.

Stubborn I have been since a small child

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

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

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

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

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

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

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

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

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

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

That’s where the niche part comes in.

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

What works for INDIE GENRE promotion?

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

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

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

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

Stealing fire from the indie gods

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

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

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

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

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

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

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

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

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

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

The HOW

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

It may not be doable.

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

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

What I’m NOT happy with

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

Negative:

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

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

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

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

Positive:

Thank God for positive!

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

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

Why point out only some people like it?

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

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

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

The topic is esoteric to the point of madness

For which I apologize.

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

So I share it with my friends.

You’re already used to me.