Tag Archives: Life

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.

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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.

A white rose for my memories

Bouquet of white roses and other blue and white flowers Alicia Butcher EhrhardtMEMORY TRIGGERS?

Things stay with you.

My Mamina, my mother’s mother, lost two boys. One, my uncle Joseph, was her last child, and lived only a day. The other, my uncle Billy, named after my grandfather Papa Memo (Memo is a nickname for Guillermo – William), came down with encephalitis at eleven.

My mother told me the story of how she rode in the taxi with my Papa Memo to take Joseph’s tiny coffin to the cemetery because Mamina was too devastated to go, and still dealing with the birth.

But she was only sixteen, and she missed her little brother Billy enormously, as of course they all did. A child of eleven is not really a child any more. It must have been very hard for my aunts Alicia and Betty, who were even younger.

Families cope with these catastrophes because they must, but it is to their credit that none of them became embittered in any way. My grandparents were some of the warmest people I have ever known, and showered me with love (and possibly a bit of favoritism) when my parents moved us all to Mexico in 1957.

I’m going far afield in a bit of background, but something has come, in an odd way, full circle, and I’m stopping to record it. I’m afraid if I don’t, I might forget.

Mamina told me one day in the garden of the house at Adolfo Prieto 1225, Colonia del Valle, Mexico City, of how, after Billy died, a day toward the end of the year, she came out to the garden to find a single white rose on one of the rosebushes, long after the end of the season, even in Mexico. And she knew, immediately, that Billy was at home in heaven, and safe.

They are with him now, as is my mother, Pepita. Yesterday I received a completely unexpected sympathy gift from, of all people, my financial advisers at Vanguard: a bouquet of flowers, blue – and white. With white roses.

Writers have only so many hours

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

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

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

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

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

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

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

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

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

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

So, picking well is crucial. And hard.

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

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

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

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

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

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

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

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

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

I finally got one step further on this task.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s the update.

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

But I am hopeful.

And I am WRITING many more days than not.

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

Peace to all of you. How are you?

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


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

Tahiro Mizuki,
trans. by R. Heath


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

 

 

 

 

 

 

 

 

 

The delicate sensibilities of a writer

THE PRINCESS AND THE PEA

I’m sitting at my computer feeling sorry for myself, and I get a sign from God: a hair is annoying me by touching my wrist.

I look down, don’t see it.

But I feel it, and I know it’s there, so I reach down anyway, and pull that thin white invisible hair up with a ‘Gotcha!’ feeling – and I know what He’s trying to tell me today, just this minute, just for now: if you can feel a single hair on your wrist, and KNOW it’s there, you have the sensitivity you need to write.

It has been a tough time. The Amazon ads don’t work – I have not yet figured out properly how to attract the people who click on my ads to continue on to buying, followed, it is hope, by reading, and then by whatever post-reading effort a reader might make: review, recommend, …

Winter is coming.

The days are significantly shorter, and today is the Fall Equinox.

One more time, I have not used the summer well, and now it’s over.

I think the hummingbirds are gone – I haven’t seen one at the feeder in days. I wish them well, on their long and unbelievable journey to Central America. If I manage to move, as we hoped to, I won’t be here to see them next year – I will ask the next owners to put up the feeder. Maybe they will.

Or maybe they will decide that all these perennial flowers – the bee balm for the hummers, the black-eyed Susans, the butterfly bush, the lilies – are too much trouble to weed, and they will replace them with lawn.

If we are still here next spring, when things need weeding and pruning again, I will have failed – but the urgency isn’t making anything faster.

New beginnings.

I just want to be in a different place for the next thirty years, if God grants me that many. A place with other people around – we have become very isolated, and it’s not going to get better.

The cul-de-sac at the end of the street needs new children on tricycles.

I can clean the windows, with assistance, one more time, but it is getting to be an almost impossible task.

It hasn’t been a good year, what with fires in the West, hurricanes in the Southeast, and earthquakes in Mexico. And genocide in Myanmar. And stents in my arteries.

Will California really be better? I remind myself the Big One hasn’t hit yet. I’m scared of moving, but more scared of staying.

The real reason?

It’s too hard to write when I keep getting interrupted by things I can’t do well needing to be done, and I’m hoping that will be minimized when I no longer feel responsible for a house. And I have a narrow window here to make use of a gym and a pool to improve what capabilities I can, and I want to do that before it’s too late.

So I can write.

I’ve missed my 40s, 50s, and almost all of my 60s due to disability; I think living in a place where someone else is responsible for almost everything has the potential to be better.

I want to be selfish.

Does this resonate? Time passing and opportunities drying up before you get to use them?

 

Queen of the Ninja Storage Vaults

IT’S THERE; RIGHT WHERE I TOLD YOU

Yes! With fist pump!

Today I found the solder. Let me tell you the story.

I am famous in my family, and even now that the kids have left home, my powers are intact.

IF nobody moved them (that is a fairly important part), I can tell you where an awful lot of things in this house are stored. (It’s also on a card in my storage card file, but nobody other than me looks there.)

I have had that power since before the children were born, but it was just a normal skill, and didn’t develop into a super-power until they were old enough to send on hunting expeditions to the basement (and other places, but the basement is notorious).

The object of my command

was, of course, to retrieve an item I needed (rarely one someone else needed, but it did happen) from the basement storage area WITHOUT me, the maternal parent, having to go down to the basement.

This is the object of the hunting expedition most mothers send most children on.

My mother used to catch me unawares and start her command with, “You’re younger than I am…,” something rather hard to dispute. So I learned from the best (she managed five daughters, a cook, a laundress, a gardener, and a maid or two, with aplomb, but these minions had regular hours, and these orders usually happened after those). Then she would send me upstairs if we were down, and vice versa.

So I would send the Ehrhardtlets down to the basement with very precise instructions describing the appropriate shelf, drawer, or box, and request the item I didn’t want to go up and down two flights of stairs to acquire.

The results of my command

“I can’t find it.”

Or worse: “It’s not there.”

Sigh.

Followed, if I really needed said item, by the traipsing down to the basement (or occasionally up to my office) with said offspring in tow.

And, usually, the highly satisfactory discovery of the item in question EXACTLY WHERE I SAID IT WAS.

Followed immediately by being accused of having ninjas which had quickly put it there, because it wasn’t there when they went down (or up – usually for my good scissors) to look.

Uh huh.

Not just the kids

“I’m going to the hardware store for some solder.”

“We have solder. Did you look in the solder box?”

“There’s no solder in the solder box.”

“Are you sure?” (I’m up three half-flights of stairs.)

“Can’t find it.”

“I’ll be right down; I’m pretty sure we put some away just the other day. You didn’t use all of it, did you?”

“No.”

I go down to the basement. I look to see – having some vague memory of using the labeling tool – whether I put the solder in a different plastic shoebox (and labeled it – because that’s what I do). I look – after asking him – in the boxes where we carefully placed all the parts of the current job that took over the workbench. Nope.

Frustrated, I go back to checking the solder shoebox for the third time.

And there it is! The solder is in the donut-shaped white plastic container, with a loose piece coiled up in the hole. It’s in the box clearly labeled ‘soldering supplies.’ I hand it to the husband, get an incredulous look back.

He has more sense than to mention ninjas, so I, having just located the solder where I said it was, IN ITS PLACE (even though even I couldn’t SEE it), mention them.

We laugh.

And I remain the Queen of the Ninja Storage Vaults.


PS Occasionally it was on the next shelf.

PPS This was used as an occasion of glee.

PPPS I am rarely wrong.

 

 

The slow posts of summer 2017

THE SUMMER SLOW DOWN IS ACTUALLY A SPEED UP

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

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

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

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

On the To Do list:

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

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

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

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

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

I think that’s the major ones.

CCRCs in California

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

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

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

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

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

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

Dejunking is slow going

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

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

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

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

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

Exercise, walking, etc.

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

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

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

I swear.

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

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

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

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

The career as novelist

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

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

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

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

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

Drop a line

How’s YOUR summer going?

 

 

 

 

 

What to do with past insights

HUMMINGBIRD AT FEEDER

HUMMINGBIRD AT FEEDER

I AM WATCHING A HUMMINGBIRD ESCHEW THE FEEDER FOR FLOWERS

This is a photo so old that it’s my previous feeder! There is a birdie out there visiting the flowers (which have stopped blooming – I need to dead-head more of the bee balm) aggressively – and not stopping to cheat for a drink at the feeder I just replenished this morning. Smart bird! Go for the real stuff.

Not a very good picture – taken from my office window, and the birdies wiggle.

The hummingbird moving in my peripheral vision reminds me to stop, blink, breathe, and look further than two feet away at the monitor.

New feature (for me): bits from the past.

I’m starting a new feature with this post: Insights from my Notes.

I have several millions words worth of notes in notebooks and in my Scrivener writing files, and I occasionally read one – and promptly forget its insight again.

Since I seem dry lately on writing about writing – I’m actually in a place where I don’t want to change much of anything, but just to finish the Pride’s Children trilogy before I forget what the heck I’m doing, or go senile (always a possibility) – I haven’t had much to blog about except illness – and some of the insights of that process.

Illness? Three stents in my cardiac arteries

And I have reached such a place that my cardiologist won’t see me again until January – and didn’t even bring up the fact that I have stopped taking ALL the meds they recommended (on pain of immediate death by massive heart attack).

So the battle there is a stalemate. And I am keeping up the cardiac rehab in my basement – and trying to increase the amount of exercise by tiny amounts over the next few months.

And I am deliberately ignoring all chest pains that are not mule kicks, and all sharp pains that come and go, and anything that doesn’t grab me by the neck and insist I do something, because I am literally tired of living on the edge and overthinking this thing. If the big one comes along, and is silent, it will get me anyway.

I have bigger fish to fry.

Today’s insight comes from March 8, 2016 at 9:51 AM

We have a tradition in this country: Flannery O’Connor, Margaret Mitchell, even Harper Lee, of pouring time, love, and everything you have into the slow writing of a novel. This is what I want.

Some shameless self-promotion now goes with the territory.

So be it.

Putting endless time into something does NOT guarantee it will be good. Not putting time into something does not guarantee it won’t be good.
But with my life, this is what I know, this is what I can do.

I could still be ridiculous, off key, have delusions of grandeur that are not justified.
My ego could be massive with no reason.

But I think it is because I actually have something to say, and this – fiction – is the way I can say it.
Others do plenty of advocacy [for CFS] – and I am shamelessly letting them do the work FOR me, since that is not my charism.
Fiction is mine.

I think I have something good going, and I need to spend the time to finish it – without the fear that dogs my steps.

I bid you all a good day – and hummingbirds.

Writing in a niche market is fraught

AND CAN BE VERY HARD ON THE EGO

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

What is the niche? INDIE NON-GENRE fiction

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

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

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

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

I have not. Yet.

Stubborn I have been since a small child

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

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

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

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

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

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

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

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

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

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

That’s where the niche part comes in.

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

What works for INDIE GENRE promotion?

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

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

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

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

Stealing fire from the indie gods

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

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

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

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

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

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

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

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

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

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

The HOW

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

It may not be doable.

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

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

What I’m NOT happy with

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

Negative:

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

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

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

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

Positive:

Thank God for positive!

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

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

Why point out only some people like it?

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

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

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

The topic is esoteric to the point of madness

For which I apologize.

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

So I share it with my friends.

You’re already used to me.

Walking around in fear is stressful

IT IS NECESSARY TO CHOOSE TO DUMP STRESS

I’m walking around fearing sudden death, sudden incapacitation, and the need for more time-sucking procedures/tests/doctor visits/hospitals…

It’s too stressful to LIVE THIS WAY.

But after a certain number of life hits on the head with a 2 x 4, there comes a state close to ‘learned helplessness,’ where, if you’re not careful, you LET the stress have free rein – and, while you can’t change reality (whatever that is for you), you have forgotten that you CAN change your attitude.

It never stops, the stress from life

In addition to the medical stuff, which came unbidden and must be dealt with, willy nilly, I now have some dental stuff – and what the dentist thinks is necessary to do.

And I’ve accepted the job of ‘person who locates and chooses our permanent abode.’

Permanent, as in ‘where we – husband and I – will live the rest of our lives.’

The permanent solution to life

We are looking at the particular model of a Continuing Care Retirement Community (CCRC) for a bunch of reasons, the main one being that we want to spare our children (none of whom live close to us now) the ‘problem of mom and dad’ – basically, what to do with us when we’re no longer competent to manage our own affairs, and they have to step in and make decisions FOR us.

We have seen, first hand, how our parents dealt with this.

First hand – and at a distance.

And it is an interesting general problem which we’ve now seen proceed four different ways!

In Mexico City, my four lovely younger sisters have done the ‘huge extended family takes care of mom and dad’ – and are continuing to date with Mother. Done with love, it has still taken a huge amount of resources, and I have been in no position to help with much – I barely manage to visit every couple of years, and do the tiny bit of US paperwork (still incomplete) because my parents are both US citizens.

In the States, my lovely sister-in-law, who has always lived much closer to my in-laws, has undertaken the huge and complete burden much of the time, shepherding her parents as they wished and she could, and pushing for more permanent solutions when they had to be undertaken. By herself, with occasional help from her brother – as she requested it – she is still supervising all the care for my FIL.

We will have no child close, geographically, unless we move close to one of ours (and that child doesn’t move following professional opportunities, the thing that took them far away in the first place). We have no extended family in the States.

And I, with my disabilities, could provide little help to them, even if I lived close.

Making our own choices requires an enormous amount of work NOW

Evaluating places to move to, figuring out finances (husband is doing most of this part), comparing the amenities – and the long-term healthcare options – at each place has become my additional task, added to trying to write, learning to advertise – and the energy-sucking cardiac rehab exercise.

The additional task that comes when you decide you no longer want to be in charge of a suburban NJ house is selling it. Which require getting it ready for market. Which in turn requires fixing a number of ‘little’ things which, while they don’t affect the quality of living in a house all that much (such as a bump on the driveway from a tree root), WILL affect either the salability or the eventual sales price.

And the final task: dejunking a house we moved into in 1981 and reared three children in (and homeschooled them in).

Even with an assistant – whose time has been mainly spent lately helping the Master with the annual gardening tasks, not me with the dejunking – the decisions are mostly mine. And I don’t make decisions easily (that brain fog thing you have with CFS) or quickly, even with help.

There are twin mottos to keep me going: ‘If it doesn’t give you joy, out it goes,’ and ‘If it won’t fit in a two-bedroom smaller apartment, out it goes.’

Even then it is hard to make the decisions, and they must come out of my tiny daily supply of ‘good time’ – which is also my WRITING time.

Compartmentalization – and all the other tricks

The stress accumulates. I notice. I poke holes in it, take the time to do my de-stressing yoga-type breathing. Repeat.

Because there IS too much stress right now, even if the ultimate goal is much less stress.

To Do lists. Using a Scrivener Project for each of the tasks.

Doing the required things – I will not give up the cardiac rehab exercises, even if they are not yet providing anything much in the way of extra energy.

And letting go of the guilt, including the guilt that pops its head up because I can’t contribute what I should have been able to contribute to this household, had I not gotten sick all those years ago. A hardy perennial, that guilt.

And the guilt of actually spending that money we have carefully been not spending all these years, so we could take care of our needs in retirement.

And, almost daily, talking myself down from the ledge of ‘Woe is me!’

Writing suffers when the writer is stressed – normal

Blog posts have suffered, and will continue to, but, ironically, I need this outlet – because it de-stresses me to pin all this stuff to the ground in its little cages, where I let one problem child out at a time, on my better days.

The writing happens most days – though not as long. I have learned to accept that pinning something down on a timeline I haven’t looked at in two years WILL take that day’s energy – and is a GOOD use of that day’s writing time – because it MUST be done.

Most of these are from things I probably should have figured out long ago, but 15 years writing the first novel was already long enough!

I think there aren’t too many left, but have just dealt with a doozy.

And am very pleased with myself because it DID work out – and locked in, again, that odd feeling I have sometimes that I am a chronicler of an actual story. Good if you’re writing mainstream fiction with a long timeline, many characters (64 NAMED characters as of the last time I counted), covering locations in several different countries and states.

My solution to stress always includes writing it out

That’s how I make sense of the world, take the circling thoughts out of my head and acknowledge and record them, and eventually find ways to deal with them.

It is also part of my usual process to… I don’t want to say ‘cheer myself up,’ because that somehow implies putting a false face of happiness on top of the real problems. To talk back, to the stress, to the situational depression, to my feelings of inadequacy, to the long list of things I SHOULD have done and SHOULD be doing which get ignored.

Basically, the MORE dysfunctional I become, or allow myself to become before I notice that it’s gotten me again, the LESS I can do to change anything that’s causing the dysfunction, and so I have to get out of that state. And I’ve already proved – by trying – that I cannot accept chemical help and still get anything done.

So it’s my own resources, the written process after the thinking, and continuing to chip away at everything as long as God give me life and any ability to do.

And it’s a good time to prioritize (which I’m not doing as well as I need to).

MY motto is: “I’m working on it!”

Thought you’d like to know – and me to record – what ‘it’ is right now.

I’m working on it. You?

 

 

 

 

 

 

 

Writing poised under the Sword of Damocles

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

UNSTABLE ROCKS WILL CRUSH YOU

There are too many things going on in my life, and all of them critical.

But the thing that is making it hard to write right now is one I hadn’t expected: I can’t remember quite how I felt BS (BEFORE STENTS), when I ONLY had CFS.

And by ‘feel’ in this instance I mean sensations in the BODY.

What sensations am I having that are worrisome?

I’m writing about these because they are both common and keep happening.

I’m doing far more exercise (even in my pitiful little amounts) that I was doing before. Part of it has involved a rowing motion with my arms against a resistance, which uses the chest muscles (pectorals) in an unaccustomed way.

So it isn’t really surprising that these muscles have a spot or two where there is sensation. By which I DON’T necessarily mean pain. Just a tightness that is in the muscle, in places which vary but are repeatable. Over and above the left breast. Outer, center, inner – is what I call them. Once of them seems to be relieved by burping. There are one or two similar spots on the right side – but the right side is dominant, and the muscles may be more used to being used. So, less noticeable?

Are those spots connected to the stents? Or are they simply the same spots on the same muscles – because that doesn’t change. Are they INSIDE the ribcage? Or outside, in the overlying muscles. It’s hard to tell.

There is a slight shortness of breath – when I climb a bunch of steps in a row. Or walk a longer distance than usual unsupported, such as when I walk from the house to the car. Or walk across the lawn to the mailbox and back. The heart rate can go up noticeably – until I sit down and let myself relax. I should expect SOMETHING when I do that – when is it too much?

There are muscles in my upper arms which get a bit weird – sometimes one will make it impossible to sleep because it waits about 6 seconds, and gives me an electric shock – for very long times, until I get up and do some range of motion exercises and some stretches and maybe eat something, and sometimes take ibuprofen (I’m trying to minimize NSAIDs, so I resist).

The question: are these significant?

All of these things could be symptoms. Of clogging arteries. Of something about to happen again. Of something not quite right.

But the thing is that they are not up to the level of being ‘reportable’ – or, heaven forbid, calling the doctor about on a weekend, or going to the ER.

I feel I’m on permanent ‘symptom watch.’ I’m waiting for the symptoms to get worse before doing something, in the same way I should have done something when the shortness of breath happened BS.

They used to drive me crazy in the hospital asking me to rate my pain. For someone who lives with a fair level of constant other pain, it is difficult to choose the higher numbers on the scale, and I’m aware of both minimizing and exaggerating as possibilities.

So, not being able to say ‘this is significant,’ and instead being in ‘wait and watch’ mode continuously is stressful. And stress is bad.

It would help if I could remember which of these were life BS

Standing has been a problem for years, and causes pain. So is my exercise making that worse? Or is something more nefarious going on?

If I walked with the walker BS, I often had pain the next day – I’m supporting part of my body weight with those chest muscles and arms on the walker.

I did as much exercise as I could do prudently before – including a lot of isometrics, which involve clenching a muscle and holding it. I know there were times when I did more than usual, and really noticed it.

And I used to ride the bike, too. The next day I usually felt it.

But I had no reason before to make an accurate record of pains and locations – my modus operandi has always been to ignore most of this stuff as much as possible so as not to waste energy on what I couldn’t change anyway.

PTS anyone? Post-traumatic stress?

It’s one of the major symptoms, being hyperalert, and wondering and worrying about things which may or may not be triggers.

Always being on alert is more than exhausting.

Wondering exactly where on the continuum you’re supposed to do something wears you down. That and wondering if it’s new/real/important. Or ignorable.

So I’m sharing with my blog, and hoping that noticing and documenting feeling physical and mental is enough to disarm them – and that the PTS is slowly going away as I do so.

I really don’t want to have to find someone and take the energy to explain all this stuff to.

Thanks for listening, if you got this far. Share if it resonates.