Category Archives: Short posts

Death is the joker in the pack

Image of straw hat, and book with blue pen, open; Text: What do you want to leave behind, Alicia Butcher Ehrhardt

QUESTIONS OF LEGACIES HAUNT

I won’t go into detail here, but on June 17th, after we were exhausted from the first Open House (we weren’t there, but we had to get the house into tiptop form), we heard of the sad death of a young woman we had hoped would turn her life around. And the fact that she didn’t or couldn’t has haunted me for the time since.

I ask myself whether I could have done anything, and the real answer is no. Which doesn’t keep me from being sad.

And it is a useless question in a particular case, because it is so final to not be here any more.

Questions of privilege

I will never find out the details, nor does it matter that I do, not even to me. But it made me think about the privilege of being me, even as a woman who has been ill for 28+ years with a still-unknown-etiology disease. The resources I have are not useful to me – but are available to help with symptoms.

But I grew up in a two-parent family, with an education available to me, even to the PhD level. My childhood was no more mildly traumatic than any other – no child gets whatever she really wants or needs, and it wouldn’t be good for her little developing character if she did.

I was surrounded by love, and had extracurriculars such as Girl Guides and piano lessons. I have never been hungry because of the unavailability of food. I have always had medical and dental care. My problems in life are minor and common (other than the omnipresent CFS, and that didn’t happen until I was 40ish).

I have an addictive personality, so I’ve always avoided most alcohol, and all recreational drugs (Note: may be taking medical marijuana in the future for pain; makes me chuckle). Mostly, I don’t like the stupid feeling that comes with stimulants and such, and it’s that feeling that I’m avoiding. I did my small share of experimenting once or twice back in college, found that I hated the sensation in my gut and head, and didn’t repeat. No particular virtue there.

What if you have problems – and NO resources?

What if you have resources you can’t get to? Or they are expensive somehow? Or you perceive them as losing face so severely you reserve them for a ‘last resort’ – and never feel it is last resort time? We all try to protect our futures, and people may not get help because they know how bad it might look later on a resume.

I knew I was privileged – and thought I had earned it. I worked very hard in grad school, never took stupid chances (okay, once or twice). I thought you earned privilege by behaving correctly after you got it. Not messing up. But even as I was not messing up, I was surrounded by a safety net of people and institutions I didn’t want to disappoint – how much of ‘doing the right thing’ is simply that small deviations from the norm are immediately corrected?

My sisters and I always agreed we had the best parents around (by comparison with some of our friends’ parents). No, they weren’t perfect – no parents are – but we won the lottery there, and didn’t realize it.

I did my part, but everything went my way. There was always a path.

I have never been poor or homeless or infected with AIDS or Ebola or TB. I never had an abusive boyfriend. I’ve always had ‘people’ – lots of people. The few times I’ve sought counseling for something, I usually found someone reasonably competent, on my schedule, quickly enough. And it more or less worked, until I’d solved whatever it was, and returned to functionality.

I have, since birth, been solidly middle class.

Oh, and look ‘white’ enough (I am proud of my Mexican heritage – which I didn’t choose or earn, but it doesn’t ‘show’) so no one pays any attention.

Like a nice liberal Catholic, I want everyone to have the basics I take for granted. And that’s nowhere near what happens.

The ‘liberal’ part knows that, if there were no corruption and greed (ha!), there would be a lot more money for needed services.

Well, this administration has brought so many inequalities to light, it is hard to know where to start. Along with compelling pictures of rampant privilege, nepotism, greed, and the Gospel of Prosperity.

But I’ve spent the past couple of weeks wondering what I would have done in the same situation, and whether there is anything (other than voting the right people into office) I can do now. Other than comforting and supporting the living, where possible.

It isn’t enough for me to confront my prejudices and correct them when they’re wrong. And I don’t know what I can do, what with being sick and mostly house-bound. I’ve always known this – and never done anything about it except in trying to behave right in my personal life. Within reason.

The legacy part?

I’ve had the privilege of thinking about my writing, and the books I want to leave behind me. I have the legacy of my family and my children. I hope to be remembered for a while by friends.

And I have promised myself never to forget her. She had both potential and problems, and overcame many things, with much more limited resources than I. Just not all.

Pray for her, and her family and friends. And for the rest of us.


Hard to blog when real life happens.

And it isn’t a request for sympathy for me. Just that you think.

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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.

Liberate the writing mind from the tyranny of time

PLAYING WITH TIME IS THE WRITER’S TOOL

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

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

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

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

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

Half our metaphors and clichés involve time:

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

Our most common question: What time is it?

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

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

So much so that we hardly notice it.

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

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

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

Loosening the grip of time

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

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

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

Manipulating time – for story

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

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

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

‘Going to the paper’ in real life, too

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

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

Respecting time

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

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

Pretty big order, there.

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

How do you finagle ‘time’?

Give us this day our daily pain

Bromeliad in green and red. Text: Any purpose to daily pain? Alicia Butcher Ehrhardt

WORTH OFFERING UP IF YOU’D GET RID OF IT?

Some days, if I squint at the daily/morning skeletal pain and muscle pain, I can call it the result of not stretching, or even ‘stiffness’ or ‘mild joint pain.’ synovial fluid in the joints needs to get moving, and the joints themselves have adhesions – everything’s, scientifically speaking, gummy.

Some days it’s worse than others. I don’t like it, but I can handle it.

But this morning, while resting in extension (like the Sphinx) on the floor, I was marveling that I’d never noticed that ‘Give us this day our daily bread’ from the Our Father has one of those little cross-linguistic glitches – the word for bread in French is pain.

No rhyme or logic to it, just a noticing.

The saints offered their pain up.

I’m not saintly or heroic, but I can do the same thing, try to handle every day with as little medicine for pain as possible (to ease the load on liver and kidneys in getting rid of the byproducts). I can ignore some of it, and a special seat cushion takes the brunt off, but there is usually enough left to be, well, significant. Too bad, and I say, “The heck with it!” and try to find something that won’t leave me groggy but will reset the brain.

Above that level, there is the way it takes over, and you do nothing else until stretching, isometrics, yoga, and chemicals are allowed, even if I end up not being able to think.

I feel for my friends who live with a lot more than I do – I had that experience as a side-effect of the various cardiac meds: every single one of them raised the pain to the I can’t think of anything else because I’m dealing with pain level. Glad the new cardiologist decided the benefits, if any, weren’t worth the consequences. Not that I would take them now, but it does help to have at least one doctor who’s okay with that; really reduces the stress.

I don’t understand offering pain up.

I’m not good at those theological bits. I don’t believe God gives other people pain or suffering that is waiting for me to offer my pain to be removed. But pain does teach you a lot about self-reliance, and getting help, and the limits of what you can take and do. Many people reduce or ignore what others magnify. I don’t see the point in taking on more just so you could offer up more. Seems like there are no good limits on that.

I do offer up acceptance and patience and such. I don’t ask Why me? because the answer is Why not me? if there’s going to be any at all. Not often, anyway.

I’m scared it will escalate – and I won’t be able to do enough to ameliorate it to the bearable level. I don’t think I’ll get rid of it any more – it’s too constant a companion.

I’m a wuss: I offer it up, but will do everything possible to get rid of it – at the same time.

A writer’s Patreon can be fun

Neon plastic dinosaur toys with text: A new venture, a writer's Patreon; Alicia Butcher Ehrhardt

FOR THE CHATTY WRITER!

I just finished another free public post in my new Patreon:

Workspace notes for Scene 21.2
https://www.patreon.com/posts/18317676
984 words

I’m using this Patreon as
1) a place to post the finished scenes in Book 2 (Pride’s Children: NETHERWORLD) as I create them – the first chapter of the book, Chapter 21 in the trilogy as I number continuously in case I ever get to put the whole thing in a single volume (tagged ‘Free public posts) is now posted in its entirety, a scene a post.
2) a place to talk about me, me, me: my writing process, my ideas, my scenes – for those with a burning desire to examine how I do what I do (still producing more ‘Free public posts’ for now).

Why? Because I need it; but more because my writing process produces 10 to 100 times more written material, per scene, than ever ends up in a scene, and that’s the kind of ‘reward’ Patreon recommends that writers produce for their patrons.

I’d love to see Ursula LeGuin’s work notes for The Left Hand of Darkness if they were available, so I’m enjoying producing a few of this kind of posts to see if they are attractive. My #1 patron loved the first one. We’ll see how her enthusiasm holds up.

And it got my brain going this morning to have something both specific, and not too hard (as it’s based purely on that background material I already produced) to get writing on.

Stop by and poke around the free stuff already there, and give me some feedback. Are you interested in having patrons?
https://www.patreon.com/alicia_butcher_ehrhardt

And for me, the question is: Will you be my patron?

I checked out many of the writing Patreons. It’s not an easy site to do searches, but patience was rewarded, and I looked at fifteen pages of them to see what other writers were doing, what they were offering as rewards, and where they were on their writing journeys.

For strict writers of fiction (short stories, novellas, novels), I noticed that many were looking for support while writing their first novel – with no previous material listed as proof that they could finish one.

It is continuous crowdfunding – so to keep patrons interested and coming back, the writer has to produce a lot of new material.

I’m among the more organized Patreons; it isn’t a requirement. I’m sure the pressures of keeping a subscription site going are considerable if you don’t have a lot of usable material already. There are a lot graphic artists doing things like webcomics and graphic novels. Alas, I lack the talent (or the interest to develop any I like) beyond producing at least a few more covers that scream ‘Alicia did it!’

When I get to that stage again, I might use this (if there is interest) to post not just the final cover, but some of the steps and the thinking. Again, if I’m doing the background writing anyway, some of my readers might enjoy watching the process.

Reward tiers, ie, cost to patrons

My lowest tier is for scenes, and the next lowest is for scenes + background posts. Patreon wouldn’t let me offer them for less than $1, but you are allowed to cap the number of payments you will make in a month (which won’t stop you from getting them, only from paying for more than one a month).

My intention is to post up to two scenes a month, and up to two additional background scenes a month (to give myself time and space to make them look good – and remove a few spoilers from my notes which were intended to be private or to overwhelm my biographer(s)).

Patrons will help shape what I put up for those Workspace posts.

There are rewards for the truly committed – I’ve priced them in consideration of how hard it will be for me to satisfy the requests, and warned some may bring my writing on that day to a halt (I can only use each energy spoonful once, and I get far fewer than normal humans get).

Patrons can stop patronizing (patroning?) at any time, and late joiners will have the advantage of getting more early posts for free – and the disadvantage of not having as many credits toward a copy of the book when it’s finished.

So it’s an easy thing to try out.

1) Read the public posts already there (click button in sidebar to take you there).

2) Decide if you want more.

Easy peasy.

Maybe I’ll see you there. Got questions? Wish I’d had someone to answer them when I started the Patreon, but even I managed it in a week or so.

 

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.

Update on Pi day 2018: almost alive

JUST SURVIVED ANOTHER SH*T STORM

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

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

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

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

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

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

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

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

Status post March 7, 2018

IMG_0080

STILL HERE, STILL ALIVE

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

House:

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

New Jersey:

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

California:

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

Writing:

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

Pride’s Children: NETHERWORLD

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

Health:

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

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

And how are YOU?

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.

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.