Tag Archives: Life

From a slow writer: NETHERWORLD in scenes

 

Not a working button; link in SIDEBAR

ONLY FOR THE IMPATIENT

Me at Patreon.

I can’t do an actual Patron linked button because this is a WordPress.com free blog (for which I’m very grateful), and you can’t sell things from them. [Figured out how to make a link available in the sidebar!!! – updated 4/16/18]

I am literally terrified to change anything on my blogs. It isn’t the money, though, unless you’re selling very well, costs can be more than you earn.

It’s change. There is so much change in my life right now, I can’t take on any more.

Plus it’s time – to figure out a WordPress.org site would take more time than it’s worth, and make NETHERWORLD even later. Seems counterproductive.

Click the link (not the fake button) – there will be a few scenes from the beginning, and in a week or so, all of the first chapter (Chapter 21 in the continued Pride’s Children numbering) for you to read.

For those who become patrons, I’ll post the scenes as close as possible to finishing them, as I serialized PURGATORY in 2013 – 2015, and they’ll get access to the completed book a little sooner than the general public.

Why?

I did this for myself, for the fun of it. I expect few of the people who say they can’t wait for Book 2, Pride’s Children: NETHERWORLD, to be serious enough about it to sign up for an inexpensive Patreon and get the scenes as I finish creating and polishing them, in my painfully slow and deliberate writing process. I’ve made it ‘pay per creation’, not monthly, in case my cache of startup finished scenes runs out.

I know I can do this – I serialized PURGATORY, publishing a finished scene every Tuesday for two years. It’s presumably going to be a bit faster this time.

There will be some extra content, available in special posts, because I generate at least 10 to 100 times more words than end up in a typical 2000 word scene during the writing thereof, and some of it is interesting.

Since I will be talking mostly to true fans, I expect to have some discussions and questions of a different sort than on this general writing/life blog of mine. If so, I’m hoping it will encourage the writing. That is if anyone signs up: I’ll do the writing anyway.

It’s a different beast from this* or the Pride’s Children blog**

For one, I have expectations of my patrons (and tell them right up front), which I’m always muting in the world in general (where nobody wants to hear writers talk endlessly about their ‘creations’).

It’ll be all about the book and the writing and the characters, and possibly the research and the ideas…

Not so much ego (though there’s plenty of that) as self-centeredness. Me, me, ME. And my book, of course.

Different focus, different content, and me as supreme ruler of… Oops! Don’t have any interest in running the world – too much work, not enough writing time. Just what I’d love to talk to people about, as they try to slip away.

(*General and writing and life posts here.)

(**The Pride’s Children blog was specifically created for those who want to be notified when NETHERWORLD is finished, and I promised not to use it for anything but that and the occasional sales.)


Finishing the trilogy and the story is still top priority

Writing fiction is still the main focus, and everything else comes to a halt when the brain and body give me a break and I can write. And I won’t be writing too much additional content/new blog posts at Patreon, but more grabbing ‘bits’ and throwing them out there from the massive archives.

And patrons can join or quit any time.

I’m doing this for fun – and for me.


Figured out how to make a link available in the sidebar!!!

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Life imitates art for investigative journalism

A red typewriter with a manuscript in progress, with the words: Can a story contribute to the cause it's based on? Alicia Butcher Ehrhardt

EMPATHY COMES FROM SOMEWHERE

ALL my ROYALTIES for Pride’s Children for April 2018, Kindle Unlimited, ebook, and print, will be DONATED to: Help me help ME/CFS investigative journalist, David Tuller, PhD Public Health, Berkeley, get funding for another year.

David has been unbelievably hardworking this past year – and is up to speed. More than that, he is feared (that’s the only thing that explains it) by the UK psychologists who insist a disease I’ve had for 28+ years is both all in my head, and can be cured by 1) changing my belief system, and 2) doing more exercise.

I won’t tell you how useless it is to turn a real physical illness into hysteria. And that I would be in perfect shape if exercise helped: it is KNOWN to make everything worse for us – within very strict limits, I stay as fit as possible, but going over those limits will crash me for days.

Sympathy comes from watching someone else’s story

Beautiful real life ME/CFS (ME/CFS – myalgic encephalomyelitis/chronic fatigue syndrome) sufferer Jennifer Brea gets our sympathy, for her wonderful documentary UNREST (hope you’ve seen it) portraying her personal story, and that of others.

She’s much more photogenic than I am. The documentary was actually nominate for an Oscar!

She’s also had ME/CFS much less time than I have. I really hope she recovers – something which seems to work better for patients if they rest aggressively in the early years.

But to get EMPATHY for this disease

which has devastated the lives of so many millions worldwide, you either have to get the disease (please don’t) or live it virtually – by reading. Pride’s Children: PURGATORY lets you live with CFS for long enough to see how it gets into your bones and affects everything in your life. And yet it is only subtext to the story.

One more degree of difficulty for life, living with a tiny fraction of the energy able people take for granted.

I want more people aware of what someone with ME/CFS goes through, and it is similar to many diseases in some of its aspects. Chronic invisible illnesses hide everywhere among us, and we keep them hidden because no one wants to listen to the details.

As Pat Patterson, Amazon reviewer, says:

“You get a private tour of the life of someone living with an incapacitating disease.”

If you haven’t read, or know someone who hasn’t

This would be a good time to get them to read – even to gift them Pride’s Children: PURGATORY on Amazon.

As I’ve probably mentioned more than once before, I make about the same amount in royalties whether you buy and ebook or a print version, or borrow the book from Kindle Unlimited (with subcription or free trial). Paper is more expensive because there is, well, paper and shipping involved. But because it is a nice fat book, I’ve been able to price so that any of the formats available (including a KU borrow) have about the same effect on my bottom line. So you can freely choose which is your preferred format.

And do a little extra with your dough.


A brief description from Pat Patterson’s review:

“Kary is CLEARLY a hero, by any criteria you want to apply apart from armed combat, and she is the center of the book. She lives in isolation in New Hampshire, and writes; she suffers from Chronic Fatigue Syndrome, and it robbed her of her previous career as a physician, and gave her weak/treacherous husband the excuse he needed to rob her of her family. She has other grief in her life, but she does not share the pain casually.

“Andrew is an Irish actor/singer/modern day knight, who is on the verge of explosive fame, who values his privacy and guards it like a dragon guards his gold. Their paths cross in a late-night talk show, and sparks fly.

“Bianca is a drop-dead gorgeous actress who resents being trivialized by her spectacular beauty. She is attempting to pry credibility from the paws of the power structure, and intends to use Andrew as the crowbar.”

Hey, when your readers are so articulate, it’s much better to quote them. (Used with Pat’s kind permission.)


Thanks to Stencil for the ability to create images like the one above – their picture and fonts, my words.

Chinchilla peeking out between bed and dresser

A NEW HOME FOR GIZZY

It’s not a very good picture (I’ll replace it when I can), but my regular readers know that I have been stressing about either placing my chinchilla with new owners OR moving her to California to a yet-to-be-chosen retirement home.

Either was going to be stressful for her and for me (and for my very patient husband). From New Jersey to California, especially when we don’t have a new place yet and haven’t sold this one, would be … complicated.

But re-homing a pet is a major challenge in life, as anyone who has ever had to do it knows.

The search is over. A good friend, and former assistant, had mentioned a month ago she was interested in Gizzy.

And today Gizzy and her trousseau moved further south in NJ, to what is really the PERFECT home for her: younger, healthy people with experience with small mammals and large ones, and definitely pet people.

I’m not really a pet person

Everyone laughs at me when I say this, and points to the spoiling of the little grey furball by yours truly.

I’ve had Gizzy for over five years, and enjoyed most of it.

She only had to sit there and look at me for my heart to melt. Because she is so beautiful (note to self: must post better picture) and I’m a sucker.

When she did additional things, like sit on my lap, touch noses for a treat, or give me her paw (if you don’t melt when an animal does this…), it was gravy.

‘Owner’ is a misnomer – expect to be more of a zookeeper

But chinchillas are problematic as pets, since they are not really domesticated (disregard Youtube videos) because they are awake for very short periods, generally dislike being picked up or petted (Gizzy chose to sit on my lap), and run entirely on their own timetable. They are overproduced by unscrupulous breeders who sell them to people who don’t realize the chinchilla can live TWENTY YEARS under the right conditions.

They are wild animals, and as such, chinchilla shelters are overwhelmed by mistreated, ignored, or badly understood chinnies who are confined to cages forever. You are given the role of zookeeper when you get one, for relatively little return of affection (the stinker loves my daughter better than me, and behaves – for treats – much better).

You can’t return them to the Andes. And they won’t remain alive, like feral cats, outdoors. They can’t get too hot or survive much humidity. Go look all this up if ever tempted to buy one; if you want a chinchilla, please rescue one.

Anyway…

All of the above is understood by her new family/keepers, and I am so grateful they took her, today, in spite of all this (and have another family member with a chinchilla who told them the exact same things). There were many boxes – hay, treats, housing materials, the pieces to an enclosure, child-proofing gates, a roomy cage, volcanic dust, water bottles – all the stuff that either came with her (like the roomy cat carrier) or we acquired.

So Gizzy is squared away, and I can have the spare bedroom emptied, cleaned, and repainted – and will have to get used to that door being open, as it was unless a child was closeted away, until Gizzy became the rodent who lived under the bed.

I will miss her, but I am not really a pet person. She was my little love, and my responsibility, and I took that very seriously. This will be better for her. I literally can’t do the things she needs – each day it was getting physically trickier, even as I loved to have her walk on my back – when she deigned to.

Changes are unrelenting in moving us forward. There is no going back any more, only savoring everything for the last time here. It is upsetting after 37 years, and high time.


And I am proud of myself for figuring out how to take a picture with the iPhone, and email it to myself in a blog post. I guess the old brain still works a bit. I even put in the alt-text.

The major stressor and the Gordian knot

SOMETIMES THE SOLUTION IS OUTSIDE THE BOX

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

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

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

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

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

The signs were many.

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

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

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

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

Full speed ahead, man the torpedoes!

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

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

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

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

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

Such a relief: I agree.

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

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

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

The house where Pride’s Children was written

AND IT WON’T BE MINE ANY MORE

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

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

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

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

My children have known no other childhood home.

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

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

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

Ours has bushes to the ground.

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

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

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

I want to make a new home

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

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

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

But somewhere I need to leave a plaque:

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

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

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

The written record

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

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

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

How think ye?


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

Fearlessly make a stress inventory and face it

FACING STRESS IS A TOUGH ONE FOR ME

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

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

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

But I didn’t realize how MUCH stress

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

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

Fear for your life is big stress –

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

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

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

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

So, facing the stress requires listing all the possible sources

Very partial list:

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

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

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

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

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

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

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

You get the idea.

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

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

Benefits of dealing rather than slogging on

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

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

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

I have started

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

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

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

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

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

And go back to whatever I can do tomorrow.

Did it help to list the stressors?

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

It’s keep moving – or literally die trying.

If I could finish my writing first, please?

New review post on Pride’s Children site

NO RESPECTER OF PERSONS

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

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

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

Life and my Universes

Also had lovely houseguests.

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

New post (with cookies) – thanks, Stencil.

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

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

Be well.

The Discipline of the Long-Distance Writer

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.

Welcome, drive-by lurker and reader

GLAD TO HAVE YOU VISIT A SPELL

It has happened a number of times, so I will remark on it: I get up in the morning, and, while drinking Diet Coke #1 (my preferred form of caffeine), I check my blog stats, and lo and behold, there has been a jump in ‘views.’

The pattern is the same: though there may be many views of the archives, I assume it’s mostly one new person because a whole bunch of posts get a single view. I think this person may visit the archives page to see which posts might be attracting a few minutes of their attention.

But they never leave a comment or a like or a name or…

And so, for those of you in this category, first I say Welcome!

And then I suggest that you leave a thought. A comment on a post somewhere. An opinion. A like. Even an argument, if civilly stated. I love to get readers, and I like even better having my conversational gambits (for that is what blog posts are, conversation starters) taken up by someone new.

I won’t sell you anything (beyond the gentle suggestion that if you like my prose enough to read that many posts, you might enjoy my fiction (free short stories available, one novel ditto on Amazon, and more to come). But it’s always nice to know who’s listening.

Stay a bit. Chat. Visit with an idea or another commenter (I don’t turn comments off for older posts). Gimme a few words back.

I don’t bite – I just have opinions, which I like to support with whatever data I have.

The internet of ideas depends on you, too.

What do disabled writers fear most?

FROM THE DRAFT POSTS FILE – 6/30/14

Waiting since June 30, 2014:

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

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

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

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

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

Frankly, it scares the hell out of me.

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

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

That way lies madness.

We all have SOMETHING wrong with us.

And it’s only going to get WORSE.

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

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

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

So why do I write about this potentially depressing subject?

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

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


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

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

PPPS Relentlessly dragging myself back from the brink.


2018: Still here, still writing.

Stubborn cuss.

And note I finally published in late 2015.

Is the artist in the way of the art?

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

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

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

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

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

Modern digital life has changed all that

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

I prefer actual current photographs for avatars.

It is a problem for those with multiple pen names.

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

Should Romance writers be pretty?

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

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

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

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

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

What about opinionated authors?

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

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

I make judgments about people based on their appearance

All the time.

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

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

At least in getting started in the race.

Choose how you present yourself online

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

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

I need to work on that.

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

CIVIL DISOBEDIENCE in suport of CDC

HERE ARE THE WORDS THE CDC HAVE BEEN FORBIDDEN TO USE:


VULNERABLE
ENTITLEMENT
DIVERSITY
TRANSGENDER
FETUS
EVIDENCE-BASED
SCIENCE-BASED


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

But they shouldn’t have to.

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

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

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

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

Which it must, eventually.

While I’m at it:


CONGRATULATIONS TO THE GOOD FOLK OF

ALABAMA

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

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

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


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

Forgive me for yelling.

Making do with everything you’ve got

TODAY IS MY DAY

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

My random thoughts about my day

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

Who we are

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

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

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

We are everyone else

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

We want to work if we can

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

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

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

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

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

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

Who of us does not know someone in this category?

And which of us gets through life without?

Please celebrate with me.

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

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

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

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


INTERNATIONAL DAY OF PERSONS WITH DISABILITIES

Sunday, December 3, 2017


 

 

 

My funny 2017 Thanksgiving Day story

THE CLUELESS WRITER STORIES

The only excuse for this is that I’m pretty isolated, the kids are too far away for travel and for various reasons we two just don’t ‘do’ Thanksgiving any more (except that husband has opted to have me make his traditional pizza – I get the crust ready, he piles on everything he loves).

Out of the blue

My dear friend Sandy called this morning, to invite me out for lunch for my birthday. It’s a tradition we’ve had for a long time. As she has moved from New Jersey to Vermont (though her youngest is still here), it is an unexpected pleasure because she is here to celebrate the day at her old home.

I was delighted, and we quickly agreed on a time and place. We eschewed our old ‘writing partners’ traditional restaurant because, the last couple of times we’d been there, we both agreed quality had dropped.

I enthusiastically agreed to The Cheesecake Factory. They’re a bit noisy, more at dinnertime though lunch should be okay, but their food is good and has a great variety, and they have low carb cheesecake!

Write it down, Alicia!

I write the information on a Post It!, being as I am getting forgetful and don’t want to make her wait tomorrow, even changing the refill on the gel pen to make sure the note was nice and dark. I stick the note where I can’t possibly not see it several times today, which is what I need for it to penetrate.

I’m sitting here at the computer wasting time, as I do in the mornings, thinking about the posts I’ve read this morning, and the general concept of being thankful for what you have, and grateful in general. I turn to erase the message on the answering machine which is blinking in my peripheral vision’s range.

Suddenly, the slow-moving cogs in my brain finally do something. I stare at the note. I start laughing.

I call Sandy, startling her (I’m sure she’s probably up to her ears in cooking or something), and say, “Do you realize what day tomorrow is?”

She said no, and I pointed out it will be Black Friday. She still doesn’t get it. I said The Cheesecake Factory is in QUAKERBRIDGE MALL.

We agree neither of us do Black Friday – and I said, “But other people do.”

Disaster averted

We had a good laugh, picked a different place far from any shopping venues tomorrow, and will have a great lunch catching up.

I can only imagine what it would have been like if clueless me had gotten into the car and tried to drive to the Mall tomorrow for lunch, late as I usually am at that point.

I hope ONE of us would have noticed by then.

Happy Thanksgiving, my friends.

Me, I’m just grateful I’ve received so many things today to make me laugh.