Writer education: the first one-star review

Created by Melony Paradise.

Melony Paradise Sure. The laurel wreath is from pixabay so it’s CC0 with no worries of copyright blah blah blah lol. I did grab the stars from Amazon, not sure if that matters… But, feel free to use it however you wish.

AS A WRITER, I DO NOT APPEAL TO EVERYONE!

I am writing this post in solidarity with another writer in one of my writing groups, who is feeling the ouch of the first 1* review.

He/she has received a lot of good advice – from ‘consider the source,’ to ‘what the heck do they know?’ Melony created a badge to be used, because we all told the writer that it is a step every writer has to go through, and it is a badge of honor to go through the process, and that you are NOT a REAL WRITER (TM) until someone has given you a 1* review, especially a nasty one (we’re skipping the little old lady of apocryphal fame who thought she had given the writer a nice Gold Star for her book).

Every writer gets these reviews, and I took notes on mine, intending to let them marinate and simmer a while before doing anything with them, as it isn’t nice to bite reviewers back, and it is considered whopping bad form to do so (for many reasons.) If you wait long enough, and don’t name names, you will accumulate more negative reviews, and you can let off a little steam without identifying anyone.

‘When you publish, you’re going to get negative reviews.’

Notes, April 7, 2015: write your own negative review – to be prepared!

This seems to be blindingly obvious truth. It doesn’t matter what you write, someone somewhere will take exception to something in it, from your title to your name to anything in your content.

I’m wondering whether it isn’t possible to immure yourself and toughen your spirit so that you are prepared to deal with this automatic gotcha, to put up Kevlar walls before you read your first review.

Come on: be creative. You’re a writer. If your imagination isn’t up to this, there are always one-star reviews on Amazon to give you examples.

I would stop short of wishing yourself physical or psychological harm, but that’s just me. You could get creative in that part, too, and find out if you’re selling yourself short, and should be writing thrillers or worse.

There are two main things to attack when writing a negative review about a book: the book – and the author.

I’m limiting this post to the book: if you find yourself wandering off into the part of the internet mentality where you get people whose manners wouldn’t pass muster, and who think that attacking an author for writing something they didn’t like, don’t post the results below (but you may do whatever you want with them otherwise, obviously).

Getting negative reviews written by readers – or non-readers:

Notes: GoodReads reviews, a while back.

Education continues apace here at chez Liebja.

My turn finally came up on a promotional thread at Goodreads (thanks, guys). Three people had enough interest to request a copy for review purposes. They are each supposed to read and then post a review within three weeks.

Two new reviews came in today. [redacted]

I’ve never expected to appeal to everyone – that would be foolish.

That point was illustrated very clearly today, when one review was a 4* review – a Goodreads member’s first review (thank you) which said the story had pulled her in. Thank you!

And the other was a 1* review.

Reacting to a new and different negative review

I’ve had one 2* review before – I was not that reader’s taste. And I was fine with that one, as I am with the new one. I am not to this reader’s taste, either (and no, I’m deliberately not providing a link – if you MUST see it, it’s easy enough to find).

But this one was curiously different. I’m still trying to figure out whether I understand it. Not the review – that’s clear enough. Reader didn’t like it – got it. Not her style. Got it.

But she did what the other one did on a smaller scale, and which I would never do. She made statements about me, rather than the book, and ascribed a status to me based on what I had written.

We call those ad hominem attacks: about the person, not the work.

What is a negative review?

You have to remember that the review is one person’s opinion, and they are entitled to their opinion.

You asked for their opinion. If in their opinion you are a terrible writer and your book is utter trash and needs a lot of work, it’s their opinion. That’s all.

It isn’t truth you need to hew to.

You aren’t going to go out and do penance because you’re so terrible.

It’s just a review.

Go look at popular writers’ bad reviews

Pick an author you really like, one whose books you look forward to and enjoy.

There will be negative reviews. You will disagree with them.

What I consider useful information is that a popular writer isn’t affected by the reviews (too much), and goes on to cash Amazon’s money anyway. Some popular writers have more negative reviews than positive ones!

Your reaction to the 5* author/book

Is “Yeah, right. Must be all from friends and relatives.”

Adjusted reaction to your first 1* review

So go back to work, happy and secure in the knowledge that you have the REAL WRITER’s (TM) credential – at least one negative review, preferably a 1* review – and have survived your Baptism of Fire. (You did survive, didn’t you?)

 

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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.

How to pick a forever home

CHOOSE VERY, VERY CAREFULLY!

I’m in the middle of a huge search.

For a while now I have been staring the rest of my life, so to speak, in the face.

It has become – even before the events earlier this year which resulted in three stents – very obvious that living in a 4-bedroom, 2.5-bath NJ suburban home was becoming untenable.

Like the older pet which needs to be rehomed so it can live out its remaining days in relative peace, I can’t handle the little I used to be able to handle of my life – without some major changes.

ALL OF THE FOLLOWING ASSUMES YOU HAVE SOME CHOICES.

When you have no choices to make, you live the best you can, going along from one step to the next as well as you’re able. Your choices are dictated by the moment, by an illness, by something external you have no control over.

To a large extent, this depends on prior choices – did you take care of yourself physically? And did that work for you? Did you put some money into savings – assuming there was some to spare? Have you invested in a house which can be sold now? Are you able to move if that’s the best choice, or does something anchor you in place?

If you are poor, your choices are limited all the way along life.

If your health is not good, your choices are extremely limited. I’ve dealt with that one myself for 27+ years, with no end in sight; any change in that part of my life will be created, within the disease of CFS by me, and without, by some unknown researcher some day. Even if a cause and treatment are found, or a treatment only, there is no guarantee that it will reverse the damage I live with. Me managing like crazy, just to stay on a slowly-declining plane, is already doing the best that I can.

If life is unkind, you are already stuck, but there may be a possibility of becoming unstuck some day.

Facing the facts in time

Many people wait too long to make the decision where to go, what to do – and end up making that decision by accident, when a life crisis comes along.

Friends of my parents gave me a model. I didn’t understand it at the time, since they were living in a fair amount of material comfort in Guadalajara, but they went and bought into a community in, I believe, El Paso, TX. J at least was an American citizen, and one or both of them would probably have had Medicare by that age, and possibly they wanted to be in a place with access to American hospitals and healthcare. I know none of the details, but it seemed odd at the time (my own parents didn’t do the same, due to large extended family in Mexico City, and more limited funds) because of their family in Guadalajara, but now I see they were making a decision for a whole bunch of things while they were still capable and competent to make those decisions.

It has stuck with me, even though it has taken until the last couple of years for me to see the why.

I began four or five years ago to seriously consider the future. The kids were not all launched, but that time was coming closer.

I remember pointing out the advantages to a planned change – rather than a chaotic one induced by circumstances – to a colleague in a support group who was older, and whose wife was older, as well as to family.

No one listened; and the colleague’s wife now has advancing dementia – making it very difficult for him to move, for her to adjust to somewhere new, and for her to help in the decision and the move. Family has reached a different solution, and it was as a response to crises, just as I predicted, crises that might have been avoided.

The stories are everywhere: people whose parents refused to ‘be put in a home’ until a major illness or crisis caused a non-optimal solution to be hastily implemented. People who didn’t move until one of a couple faced significant health problems, at which point it was too late to enjoy the move.

We are fortunate to have options

Which is almost funny, since the story of my life lately is that I’m completely out of options.

I preach the necessity of disability insurance, if it is at all possible (and recommend you pay for it yourself – which has huge tax advantages if you need it), because you are five times more likely to become disabled during your working years than to die – and everyone has life insurance, but most don’t have disability insurance. Private disability insurance goes beyond SS disability (which is downright stingy): it kept us middle class when I became unable to work.

Consider also the possibility of a disability lasting long enough that you really need some built-in inflation protection. I had none, and it really hurt.

I would have been able to save more money had I worked. I prefer working – keeping myself sane these many years has not been easy.

So, facing the decision of what to do with the rest of our life is happening with me still sick, but with some retirement accounts and a house which can be sold.

The parameters to the decision

I am fortunate to have a living spouse in reasonably good health – right now. In fact, I would like to preserve that health: when he goes out to clear the snow or mow the grass on a hot humid day or prune bushes standing on a platform, I worry. I used to help with the snow – can’t do that any more (but he FINALLY bought a snowplow). I used to do a fair amount of the weeding – can’t do that any more, because sitting on the ground or a low chair or bending over cause significant pain over the next couple of days, and that heat and humidity are probably what landed me in the hospital this last time.

So he’s doing ALL the work, and even with some help from an assistant, he’s still IN CHARGE of all the work. We had people last year; they were ultimately unsatisfactory.

Taking care of house and yard consumes too much of his energy, all of mine, and just has to be done again. That doesn’t even take into account ‘things that go wrong,’ such as the roof or the AC or the driveway or the trees that die.

So, the obvious is a place where we do none of the maintenance work, in or out.

Another stressor has been how hard it is to leave the house to go somewhere for a vacation, added to how long it takes us to pack – and leave the house so someone else can do the bare minimum. Homeownership had its joys when we did everything ourselves (BC – before children); then it became just work while the kids were home and things got done when they had to be done, in among all the other chores; now it’s impossible.

Pet care – you’d never believe how hard it is to take care of one tiny chinchilla, and how difficult to arrange for someone to keep her alive while we’re gone. Impossible without an assistant (thank goodness I have one now for a few hours every week), still tricky even with someone who potentially can drop by every couple of days to make sure Gizzy has food and water and the AC hasn’t died (if it gets too hot, she won’t make it – that thick silky fur coat). Already seriously considering finding her another home (anyone want a slightly spoiled chinchilla?), and am making sure anywhere we consider allows pets in case she goes with us.

These will be the best years we have left

Seems obvious, but we’re not getting any younger.

I want a place where I can make the big push for 1) getting as much exercise as the CFS will allow, 2) making the best use of any improvements in walking ability, 3) hoping that reduced stress will contributed to better overall health and mobility.

This means I need a year-round pool and gym, and PT people on-site, somewhere I can actually get to without spending a day of my energy.

And we need bike paths. Even though I can’t go far, not being able to walk doesn’t mean I can’t ride a bike! My limitation is actually the energy – I can go short rides, hope to be able to increase those a bit.

And I want good weather: in NJ, if you miss a ‘good day,’ there may not be another for a while. I grew up in Southern California and Mexico City, where weather was a stable thing, and the next day would be much like today, and both would be pleasant. Then, going out to do something will be governed by whether I have the energy today, not by whether it’s feasible!

I require a heated year-round pool. No quarter given on this one: I’m a water baby, even if I’m not actually swimming, and I’m not moving somewhere for the rest of my life that doesn’t have a pool. Not happening.

I tell the spouse that the next 5-10 years of our lives are the good ones – and if we are to do ANY traveling, it will be now. I want to see my mother and my extended family in Mexico, possibly at family reunions in Michigan. I want to go to the beach in the Riviera Maya or in places like Acapulco and Huatulco, which have warm ocean water in the winter. Because I know I can do these – at my extremely slow pace (once I cope with a week of packing and survive the week when we come back). I want to spend time doing a vacation with the kids while it still is fun for most of the family.

The solution? I’m working my tail off to find it

California has, at last count, 102 CCRCs (Continuing Care Retirement Communities) – places we can move to and get all those things above.

Some of them are unsuitable because they are retirement communities for particular religious groups we don’t belong to; others are urban and have no pool; still others are way too expensive for us (I’ve eliminated all the for-profits). Some would make it difficult for me to get to the gym or pool – my time being coherent is also limited, and the more energy I expend in getting, the less time I have for the activity; the independent cottages, ‘just a short walk away,’ seem, by definition, to require more health to get to the pool or gym – I believe an apartment in the same building as the facilities is my best option.

The CCRC concept is doing well. It is recommended you stick with places over 90% occupancy (proof of continuing fiscal responsibility), but when a place is 98% full, by definition there are few units left! People move on to assisted living or nursing home care (a CCRC by definition has both available to its residents when they need the next step), and some pass on, but the rates are not high, and I’d like to move fairly soon (once the pesky house is dejunked and sold).

It is a lot of research work and no one can do it for you. Not really. I have spent hours talking to nice sales and marketing people – only to hang up and realize there is no way we can afford their lovely CCRC. The main reason: they don’t put their prices on their websites (probably because then people won’t call and talk to the nice salespeople), but it is inefficient and wearying when you really do know how much you can afford and what you need, which most people on this search don’t yet. A tendency to put information such as ‘apartments start at…’ out for view means people think they might be able to swing it – and then can’t when the range of prices becomes known.

Don’t cry for me, Argentina

I’ll figure it out. We’ll pick 5-8 of these places, and then take ‘the trip’: stay in a few, see the physical plant, smell the nursing home portion (apparently, that’s the biggie – clean places take work and money), and have lunch with some residents in assisted living to see how they are really living – and being treated.

Then we will make a decision, hope the house-selling sill support that decision, and spend an enormous amount of my good time – and all of husband’s – actually doing this.

The average age of entrance used to be 80; it’s already dropping as people realize they can’t live worry-free if they have a house on their hands. Even with a lot of money and a lot of help, it’s a constant set of chores.

Think about this sooner, rather than later, if this kind of solution to our common problem appeals to you. Time goes by much faster than you expect.

Wish us luck (even if you would never consider leaving your home, or living with a bunch of strangers horrifies you).

 

 

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?

 

 

 

 

 

 

 

I have weeded for the last time

FEELING FOOLISH IS NO EXCUSE FOR TAKING RISKS

This may be a bit incoherent. I’ve had a rough week again.

As you grow older, there is an interesting concept of trying to identify when you do something for the last time, and whether that last doing is bittersweet. I have weeded possibly for the last time, because the personal cost was too high.

As someone who has so little functionality, these events have been coming at an accelerated rate.

I fight back. Try to continue doing things. Try to pick them up again when I haven’t been able to do them for a while.

During the spring, I weeded when my assistant was weeding, both to show her what was a weed (she’d never had a garden), and to do a bit of work that I used to love on my own garden. Several times I overdid it, and was stiff and sore for several days after.

Does weeding cause chest pain?

On Monday, with my brand new WORKING heart rate monitor, I did exercises up to the limits, which I hadn’t dared to do with an erratic old monitor.

On Tuesday, I spent maybe an hour outside, lying on a boogie board, pulling weeds, while husband and assistant pruned bushes. It was doable. I’m so proud of my ability to sit on the ground, and get up and down, that I overdo it. And it was nice to be out of the house. And not TOO warm, I thought.

On Wednesday afternoon of this week I asked myself:

Today’s contretemps was that I did exercise to a higher level (new HR monitor – this one actually works and displays continuously) on Monday, and weeding on Tuesday, and last night felt very odd, and have had the shakes, and a high BP, and a lot of (most probably muscular) pain, including in the chest area – because I was foolish enough to do my weeding while sitting/lying on a mat on the ground.

That may have been my last weeding, ever. Sigh. I love tending the garden, but I can’t afford the after effects.

Or it could be more of the other – and I’m fervently hoping it is not.

I may have to see someone and talk it all out – the hospital and stuff came back very vividly during this ‘episode’ – that’s what PTSD does.

I don’t mind the fuss IF there’s something wrong that needs caring for, but I really don’t want to go through it again unless strictly necessary, and I can’t tell. So the anxiety level is higher than I’d like, and I kept husband home from this morning’s bike ride with friends – and then spent the whole time asleep, because I didn’t get a good night’s sleep.

The perfect storm: adding small effects to get a scary one

Wednesday night, after a bunch of stuff, we went to the hospital.

Because the BP was increasing all evening. When it hits 200+/100+ I get nervous.

Because I felt unwell – shakes and chills (part of my normal temperature control problems, but were they at a higher level?).

Because I was out of it – not myself – not thinking clearly.

Because the stiffness across the front of the chest would not go away or yield to stretching. Not so much pain as incredible tightness.

Because, when I was weeding, it was much hotter out than it had been. I had a can of soda when I came in, but that’s all.

Because, apparently, I stopped drinking water, with the absurd idea that if they needed to do a test, not having water in my stomach would mean they could do it the same day instead of making me stay overnight (like last time).

You go to the hospital if you’re really worried it’s serious.

I should have known, when we went at 9PM, that something was wrong because I needed to use the bathroom as they were taking me to a room (after an ‘abnormal’ EKG) but nothing happened.

Of course, they don’t let you have water in the ER – and once you’re there, you do as they want you to do. So, as the time passed, I got more and more dehydrated.

I should have known when they said the veins on the back of my hands were standing out very well, and would be easy to draw blood from. But none of my veins, usually so cooperative, were easy Wednesday night.

When they gave me some water a bit later, I was able to produce a sample – but didn’t do a very good job of it.

I have learned this year to advocate for myself better

They came to tell me that they were admitting me. The older you get, the more risk factors you accumulate, and they want to be careful.

But they also told me both blood and urine showed that I had a massive infection, and they rolled in an IV bag of an antibiotic I’d never heard of.

I stopped them. I asked, since I had no UTI symptoms, whether it wouldn’t be better to wait until we were sure, and how long I would be okay postponing an antibiotic if I needed it, and they were willing to wait until after tests the next morning when I explained that I overreact to drugs and was worried about side effects. The nurse said the main one was diarrhea – but they could give me a probiotic for that. And seemed taken aback when I said that would be TWO new drugs for me, and I would rather wait until after the test. She said, “But it’s just a probiotic.” I explained they’ve made me sick before.

So I spent the predictable night in the hospital, disturbed every time I started getting some sleep, with a roommate who had a sister – they talked softly most of the night, but at least I was on a heart monitor, and someone was aware and available.

I asked how to stop the bed from automatically changing its setting every time I got slightly comfortable. I was told the only way was to unplug it – and lose all capability of adjusting it at all. I unplugged it. Horrible lumpy thing either way.

Once I realized I was dehydrated, I poured glass after glass of ice water down my throat. Made for a busy night, but it scared me that I could let myself get so dry and not even have an idea it was happening.

Vitals and blood tests through the night gave them data. The morning BP was normal!

I got the nurse to order another urine test, and made darn sure it was a clean sample. When they finally sent the results back, the evidence of bacterial infection was minimal. In this light, the extra white blood cells in my blood – the same on sequential tests – was labeled ‘mild’ and, since it was not increasing, deemed not worrisome.

So I let them keep their antibiotic, after worrying all night about having delayed the START of the antibiotic if I actually needed it.

My new favorite cardiologist

At half past ten, the cardiologist (another new one from the same practice) came to talk to me. He said the EKG was abnormal – but the same abnormal as my EKGs have been since the stents, so nothing to worry about. He said the monitoring all night long didn’t show any problems. He said the sequential tests for cardiac enzymes in the blood was negative after two tests, and that should be enough, given no other symptoms.

We discussed indications for coming to the hospital – and I got reassured that while high BP is bad, it takes days before it can do any major damage unless it stays very high continuously, and mine wasn’t in that region.

We discussed all the factors that made me go in – and basically concluded it was a perfect storm. He told me I was right to have come in.

I got bold – that advocacy I’m talking about – and handed him a copy of the paper on my family of stents which concludes that a month or two is as good as 12-18 months of antiplatelet drugs. He shrugged and said guidelines take a long time to catch up to research! I told him it seemed to bother my own doctor to be queried on these details – he thought my doctor must have had an off day.

I asked him if he knew my history – and he recited it back to me, correctly!

And he released me!

Subject to the rest of protocol, of course.

Which took until 4 PM.

An unexpected test – and refusing meds

When someone came in to do an echocardiogram, I asked who had ordered it and why it had been ordered, since the cardiologist had said I was free, not ‘free subject to X.’ The tech took her machine with her, and went to check it out as I did not recognize any of the names on the paperwork.

She never came back, and my nurse said it was some kind of mistake when she came to tell me she would be doing the paperwork. My nurse seemed annoyed about it, too.

I refused all the medicines the hospital had prepared for me: my own meds, but supplied by the hospital pharmacy, would be charged at huge rates. I stopped the whole procedure by telling the nurse I had already swallowed the morning ones (I had – forestalls arguments), and that the others I would take at home at the regular time with my dinner.

This also prevented the whole foofarah which would have arisen because my pain specialist has authorized brand name Celebrex because I tried four generics a year ago when they came out – and only one worked. Pharmacies that operate on bulk go by the lowest bidder, and cannot guarantee a manufacturer for generics.

I sympathize with hospitals trying to make their money in the current climate, but it is no reason to cooperate with unnecessary – and potentially damaging – things to me.

I’m fine – what did I learn?

I spent Thursday evening vegged out, Friday as a very slow recovery from all the assaults on everything (I joke I made my quota of people for the month in the first two hours in the ER – it is SO hard for me to cope with new people, new situations, noises, and bright lights). And Saturday I seem relatively okay, if slow.

I haven’t done any exercise yet. Possibly will do a shortened version of the cardiac rehab tomorrow or Monday, and ease back in.

And I have some new benchmarks. I know more kinds of chest pain that are just muscular. One doctor told me that if I could find the exact place where the muscle hurt, it was probably muscular, whereas if it seemed behind rather than in the muscle, to worry. A bit vague, but helpful. I know it’s only sustained high BP which puts me at risk for stroke. I was told only to take my BP in the mornings if asymptomatic. Duh.

I made the right call. After all the prior stuff – and the addition of all the above into SOMETHING, I didn’t have the right to put my husband through the stress. I even sent him home from the ER when they told me I’d be staying.

I managed to pack most of what I would need, quickly, in a small bag. Ate something with protein (I hadn’t been hungry all day), grabbed some Atkins low carb bars. (One ended up being dinner.)

Next time I will take salt and potassium in my own baggies, because food services and nurses simply do not believe me when I tell them I need to take a lot of both to keep my blood volume up, and by the time I see a doctor, it isn’t high on my priority list, and it is actually dangerous for me NOT to have them. The food they offered me was disgusting; I choked it down for the protein.

It took several days of my life away from me, put me through another bunch of stuff, and has left me behinder.

I hope there isn’t a ‘next time.’

Don’t take stupid chances.

Have you had similar ‘learning experiences?’


Thanks to Stencil for the image and ability to add words.

Changing book descriptions gives new life

GRAB THE READER BY THE THROAT?

The book is fixed; the advertising is not.

This is difficult for me, because in some ways I love my original book description for Pride’s Children: PURGATORY, but it isn’t doing well in sales to strangers. Without strangers finding your book on Amazon and BUYING it, you are essentially dead in the water.

This spring’s ad campaign on Amazon was a wash. I got a decent number of clicks, but far fewer sales once potential readers hit the product page. They’d already read the ad copy, and had seen the cover, so the culprit has to be the next thing in the click-path: the description. Without the KU borrows, it wouldn’t have even been that successful.

The price is also a potential problem, but setting it to 0.99 (I won’t do free – not a good plan with only one book because the question ‘loss leader to what?’ comes up) was not effective, and I’ve tried that several times, and with several promotional newsletters.

The original book description and back cover copy (minus praise):

Here’s the old description, for comparison purposes:


WHAT YOU DO WITH AN OBSESSION COUNTS

I, KARENNA ELIZABETH Ashe, being of sound mind, do… But that’s it, isn’t it? Being here proves I am not of sound mind…”

So begins Book 1 of the Pride’s Children trilogy: Kary immediately regrets the misplaced sense of noblesse oblige which compels her to appear, live on national television—at exorbitant personal cost.

What she cannot anticipate is an entanglement with Hollywood that may destroy her carefully-constructed solitudinarian life.

A contemporary mainstream love story, in the epic tradition of Jane Eyre, and Dorothy L. Sayers’ four-novel bond between Lord Peter Wimsey and Harriet Vane, Pride’s Children starts with a very public chance encounter, and will eventually stretch over three separate continents.

Note: no Selling Paragraph, no Call to Action.


A New Hope

So I’ve gritted my teeth, read tons of books and blogs on the ‘blurb’ – or book description, or many other names – and have decided to go for something which might appeal to a wider class of reader.

And hope that it doesn’t discourage the readers who would have been attracted to the original version – I still want those readers if 1) I can find them, and 2) I can persuade them that I know how to tell a story, and 3) they become convinced THIS story is worth a try.

Indies have a tough time. Readers don’t realize that we have to supply what a traditionally-published author gets with the deal: the book description comes from the publisher’s publicist.

I read bunches of descriptions on Amazon, noting which were big publisher creations. Some of these professionals are very, very good. And make bold, sweeping statements that pre-dispose you to be wowed.

My generation doesn’t self-praise very well.

Without further ado, here is the current contender:


IN A WORLD WHERE INSTANT LOVE IS PRIZED, WHAT IS INTEGRITY WORTH?

Reclusive ex-physician Kary Ashe transmutes personal tragedy into beloved best-selling novels. Actor Andrew O’Connell revels in the enviable status of leading man, with a reputation for perfectionism, an Irish temper, and broken hearts in his wake. Reigning Hollywood princess Bianca Doyle fears she’s already past her peak, and schemes to cement her position in the pantheon with Andrew as mate.

When Kary appears on a national talk show to support a cherished cause, and becomes obsessed by Andrew, movie star, she thinks she’s safe because she will never see him again. While Bianca, watching from far-off LA, knows she brings him her coveted insider rank.

But his next movie is filming near Kary’s Sanctuary, with Bianca as costar. Can Kary risk friendship with this intriguing man? Or will Bianca seduce him and meld her star to his? And will either ultimately satisfy Andrew’s twin lusts for fame and love?

Pride’s Children: PURGATORY is powerful from the very first line. You don’t read PURGATORY: you live it. A deeply psychological experience, with no sleights of hand, from the drivers’ seat right behind the eyeballs of three passionate people who can’t all get what they want. The choices, the devastating decisions, the consequences are all presented with the intimacy of a conscience. Ehrhardt conveys to you the gut-wrenching secrets of a disabled writer at the peak of her powers, an actor waiting in the spot where lightning strikes, and a ruthless woman who sees a golden future if she can but stick the Hollywood landing once and for all, as if you were capable of wearing their skin.

Buy in ebook and print; or download from KU.


Comments welcome!

‘Revenue-enhancing’ has become a dirty word

DO YOU KNOW WHAT YOU SIGNED AND WHAT IT OBLIGATES YOU TO?

Even if you have insurance!

It didn’t used to be like this, and I’m sure they have plenty of good reasons, probably having to do with nitpicking by insurance companies, but I’m getting really tired of getting lied to, and having to be on my guard all the time for every little thing when I go to the office of some medical professionals.

I don’t want to name names, as I suspect it’s widespread, but I’m finding that I can’t get out of a medical/dental office without little enhancements  to the experience being offered as if they were included, or as ‘covered by insurance, so don’t worry about the cost,’ and when I check turn out to be covered – yes, but at 50%. Or with a ‘credit toward’ some expense which is entirely optional.

Or in the case of one practitioner, when he informed us that our insurance allowed us the reduced cost which had been negotiated by the insurance company – they didn’t actually pay him anything! I felt cheapened by the experience (which was expensive), and wondered whether I was supposed to be offering him his full price!

The lists of what isn’t covered can depend on whether someone entirely separate from you has called this (whatever it is) by one name or a different name, such as people being warned lately that a hospital admission (going in and staying over night) is not necessarily a ‘hospital admission,’ covered by insurance!

It wouldn’t be my problem, except that these little untruths are destined to cost ME big money, if not just time and effort. And hours on the phone to attempt to straighten out with person after person on the phone in ‘billing.’

Is it necessary – and if so, why isn’t it covered?

I depend on my insurance company to, in some sense, control the costs of medical procedures, which, having written this, may be the problem.

But I can’t change the contract negotiated between whoever is paying for the medical insurance and whoever is paying the providers of medical services by one iota.

I don’t expect to hear, from an insurance company, “doctors recommend this as completely necessary, but we won’t pay for it.”

Also, I don’t actually hear from a provider, “this is absolutely recommended, but insurance won’t pay for it.”

Instead, I will turn up at an appointment for a covered service, and find I have to see the billing person first, because I have a HUGE ‘copay.’ At which point my choices are to leave, or to pay for a bill I wasn’t expecting. For a service the doctor says is entirely optional – but necessary.

The result? Constant vigilance is required.

And I can’t go to one of these visits and deal with something that pops up on the spot (there is a small additional charge for X because insurance doesn’t cover it) – done in such a way that you are a cheapskate if you don’t get the extra candy-flavored teeth protection for your growing offspring.

Or you have to respond to the eye doctor’s in-house glasses representative that yes, you know the frames available at Retailer-X are cheap – and that you don’t care.

You can’t get home, as I did today, and find out that the service you received as ‘it’s time for your X-rays’ is only covered by your insurer every 60 months. And you didn’t ask, because you assumed that was their job.

Am I exaggerating?

I think not. This has happened in at least five different places and kinds of medical services in the past six months.

And even the blood tests are done by a place which hands you a form that says ‘Medicare may not pay for these services’ and requires that you sign that YOU will pay for them if Medicare rejects something – the doctor ordered!

Every time you decide you’re not going to take the risk, you end up spending gobs MORE time there, and may have to fast all night again if your doctor’s office doesn’t happen to be open that early on the day you went in.

Because, ultimately, the buck stops with you, and this stuff is unbelievably expensive (when billed at full rates), and they will send bill collectors after you.

So it’s important, you have little control, you can prepare for one thing and be bowled over by something else completely without realizing it, and every single thing will cause you stress, time, and energy.

I wonder how the older folk cope?

Has this bitten you?

 

When there’s been a hole in your writing

Lighthouse at night at end of pier. Text: What can change a writer's voice and style? Alicia Butcher Ehrhardt

HOW DO YOU KNOW IF YOU STILL WRITE LIKE YOURSELF?

The Holy Grail for authors is to be recognized from their writing, because it’s distinctive and personal and memorable. It’s called voice, and goes along with having a style, sometimes for series, sometimes for all your books.

It is an interesting milestone when you find you have developed such features.

And the question I’ve been asking myself since all the garbage happened (starting way back in November of last year) is: Am I still myself as a writer?

Life events change people

And writers are people.

On some of the days I’ve been able to write since the side effects of medications have mostly been out of my system, I have noted with some pleasure that I seem to have learned how to do writing the way I do it – faster.

The process hasn’t changed – I gather a lot of bits my plotting process has decided will be in a particular scene, fill in some lists I have made for myself with such things as ‘What is the heart of this scene?’ and ‘What would happen if this scene weren’t here?’ and such, and start organizing the material into beats which make some kind of sense to me – and then the actual writing seems to flow, dreamlike, from all the little pieces, as they show me where they belong.

Maybe it’s faster because I’ve stopped second-guessing myself: most of the material will fit in, and occasional bits will be postponed, and very rarely a piece will be added to an earlier finished scene.

But I question such gifts.

Is it real?

And is it still me?

I don’t want a reader to notice that something ineffable has changed, and Book 2 feels wrong.

I won’t know the answer to this for a while, but I made a plea to my beta reader to be especially aware of the concept of change as she reads the new material (my method is to send it to her, polished, a chapter at a time).

I’m not sure what the heck I will do it I’ve been changed in my writing by the recent health events. I will accept that maybe the speed has come because I value my tiny bit of functionality even more, now that I’ve experienced how it can disappear completely for months on end.

But first I have to know.

I await her judgment. If she’s not sure, I will get more readers from those who loved PURGATORY, and beg them to look at a couple of chapters.

It’s a scary thought – and one of the things that’s been worrying me along with the obvious aftermath to health problems.

If you notice

anything specific in my NON-fiction – comments and posts and emails – that makes you wonder whether I’m still here, please let me know.

I have literally run to the end of my DIY ways: I can’t tell. And I don’t know why I’m slightly uneasy, unless it’s simply the kind of unease that makes you question EVERYTHING once you trip over something that shouldn’t have been there.

Oh, and: has this ever happened to 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.

On a bicycle I’m a human being

freedom comesLIFE IS ABOUT USING WHAT YOU HAVE, OR HAVE LEFT

It is a very odd thing, but psychologically important, that you feel different in different circumstances, depending on how you see yourself and society sees you.

It’s probably built into the brain we have that is evolved from millenia of those who survived to pass on their genes: we automatically evaluate those we see for signs of weakness, even when we don’t plan to eat them.

Where is this going?

On a bicycle you can’t tell that I’m disabled. That I can’t walk properly, or for more than a few steps without a walker. I just look like a woman out for a bike ride.

I know many people who can‘t ride a bike because their knees won’t let them, or because their balance is challenged, or because they can’t sit on one for very long due to many problems.

In some sense, I’m better than them.

We judge automatically, instinctively, and if we’re not careful, permanently.

On a bicycle I’m a normal human being.

Not something which botched back surgery back in 2007 has condemned to pain every time I stand for more than a few seconds, and who can’t push off on a stride, but only swing legs from the hip.

Why am I thinking about riding a bike?

Because I have had a major crisis of self-confidence this year, earlier, what with the chest pain and the stents, and the recovery.

And a couple of weeks ago, I got the bike out, did the ritual (helmet, cellphone in the bag under the seat, make sure the hair doesn’t get in my eyes, clip on the pants leg…) and scared myself even though I managed to go out for a spin around the neighborhood.

Forgot my bike gloves, which I later regretted, as my palms were definitely tingly by the time I got back.

First time this year. First time since the approaching winter made it too cold last year. First time since the horrible viruses of November which lasted for three months. First time since I was last myself… You get the idea.

Getting on the bike was NECESSARY to prove to myself I was still myself.

And it failed – in the sense that I felt shaky and uncertain and scared. Because I knew that I was afraid to stop if I had to, because the side effects seem to have emphasized that I’m vertically challenged. Because one of the young college undergraduates in our choir was wearing a cast because she fell off her bike. Because a friend who has CFS fell and broke his foot.

For any number of reasons, that first bike ride didn’t make me feel ‘normal.’ Even my normal, which is a lot smaller than many people’s ‘normal,’ but better than the normal of my friends who are bedridden. I wasn’t back to just hopping on a bike and going for a spin, even the short ones I take.

Solutions?

Well, giving up riding a bike seemed premature (though if you’d felt as unstable on that bike as I did, you’d be seriously considering it).

Buying a new bike? This bike I have is ancient, and rusted, and in need of serious maintenance. A recumbent bike? Or a nice, stable tricycle-for-grownups?

We are looking for a retirement community, and a move to another state is a possibility, and I’m trying not to acquire more stuff now or make permanent decisions about things like this until we are settled.

So, don’t ride the rest of the time we’re in suburban NJ?

The odd physicist’s solution

Or should I say, the physicist’s odd solution? Because it involves physics of stability.

Bicycles are stable, more or less, IN MOTION. 2-D stability, as it were. That’s why they have the kickstand. In motion, they have that gyroscopic effect that they resist falling in the direction perpendicular to their motion. Ie, sideways.

Tricycles have proper 3-D stability. Because there’s something in the perpendicular direction that keeps them from falling over, with or without you on them, whether they’re in motion or not.

Training wheels achieve this effect when you’re learning to ride.

We’re thinking constantly about all the stuff in our house and garage, because a 4 bedroom house with basement and garage has a lot more areas to stuff stuff than a 2 bedroom apartment in a retirement community, which is what we’re aiming at.

One of the things stored in our garage for AGES was a bright yellow cart meant for pulling two small children behind your bike. And that’s what my brain kicked out: stability. A cart intended for small children was designed to be inherently stable: the bike + cart has to be stable while you’re putting those little ones in the back and fastening the seatbelt. Fairly heavy duty for its job: those are your kidlets, and they are small and precious. And HIGHLY visible. With its own reflectors, even.

This time I didn’t fail

Almost didn’t get it attached – that was work. And the attachment mechanism has a plastic pin which went through the snap lock around the bike’s pole – which was maybe not as flexible as it was twenty years ago (plastic seems an odd choice, but that’s what it was). I couldn’t get it through the hole.

So I went and found a nice solid metal bolt of the right diameter, with a nice nut, and have attached this sucker pretty permanently to my bike. It can be removed, but I’m not planning to.

Success!

I put the helmet – and gloves – and bike clip on, stored the cellphone in the little bag, and found that my combination made it much easier for an unstable old rider to get started.

It may have been a placebo effect; or partly psychological (that self-confidence which had decided it found a solution). But I didn’t care. I was up and going, only a little shaky.

I put it to the test on our court: I tried stopping – it felt more stable, not as it had the last time, because I could trust the bike not to fall over, so I could afford to lean on it a bit. It was easy getting started again – I didn’t have to be on a safe place, like our driveway. I was just a woman on a bicycle, stopped. Phew!

All I needed was to not worry about killing myself or damaging something.

I rode around the neighborhood a bit. I stopped to see an old friend I haven’t visited in half a year. She didn’t even think about the cart on the back, but instinctively understood it was more stable.

And I got that little bit of self-confidence up and running: losing the ability to ride a bike was in the same category as when they take your keys away and don’t let you drive any more.

Because, you see, on a bike I’m my normal human being, and you can’t tell how many things I can’t do.

Then I went in and took a nap.

An Open Letter to Rev. Franklin Graham from a “Small Church” Pastor

When Christianity is getting a bad name from people who call themselves Christian – without bothering to follow Christ – we all live in a hateful, more dangerous world.

Trinity's Portico

Dear Frank

Can I call you Frank? This is just pastor to pastor. Feel free to call me Peter. Anyway, I have to say I was flattered when I learned that your Decision America Tour took a detour off the beaten path to call upon us “small community churches.” We are nothing if not small. We seat 30-40 on a good Sunday. And we are a century old fixture of our small community. Most often we are overlooked and overshadowed by mega-churches and politically influential religious voices like your own. We don’t hold a candle to an auditorium filled with the music of a one hundred voice choir led by professional musicians. We probably will never be recognized in any nationally syndicated media. After all, we don’t do anything really “newsworthy.” We just preach the good news of Jesus Christ; love one another the best we can (which sometimes isn’t…

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Guest post: patience, boredom, and personal choice in dealing with them

Woman floating in turquoise water. Text: Attitude makes all the differenceWE MAY BE ABLE TO CHOOSE HOW TO RESPOND

Even when we don’t get to choose what happens.

My friend Gay Lyon responded thoughtfully to my whines about patience and boredom, and has kindly allowed me to share her words.

Gay, you’ve thought so much out. I haven’t gone there, because this is actually the first time in which it has hit me like this. I was always able to try to do something, and then that something would wipe me out, and I’d be too exhausted to do something for a while. Repeat.


Gay Lyon on Boredom, Patience, and how she deals with them – better than I do

Maybe there are people who are naturally patient, but I have my doubts. I’m inclined to believe that patience is developed by having no choice. I’ve spent a lot of time the past several years waiting to recover from a crash similar to yours, for days, weeks, months, at a time. I’m on month 5 of this current one. I’ve learned a certain amount of patience, because there’s not a darned thing I can do to hurry it along, and fretting only prolongs it.

In terms of boredom, it’s a question of what to do when you can’t do anything, isn’t it? I can tell you some of the things I do, but I don’t know that you’ll like it, because if anyone had said anything similar to me before I was forced to come up with them myself, I would have thought it sounded preachy and would have wanted to slap them.

My whole life before becoming sick was about DOing. Prolonged periods of having both brain and body conked out have forced me to reflect on simply BEing. Who am I, what am I, if I am not defined by what I do? Do I, does any human being, have any intrinsic worth outside of what we do? Are there ways in which a life which isn’t a life of service can have value? I have no answers to offer, but thinking about it is a way to occupy yourself when you are lying there staring at the ceiling.

Give thanks for boredom, because when I’m feeling really, really sick, I’m not bored, I’m just miserable. Boredom is a sign I’m starting to feel better.

I have to admit, I’m not often bored anymore. I was bored a lot more the first few years I was sick. Most of the time now, I’m too busy to be bored. Not because I do so much, but because I do everything so slowly that getting through the activities of daily living doesn’t leave a lot of time left over.

Another thing which I do when I can’t do anything else is pay attention. Be very observant. Look out the window. Really look. Look at the leaves on that tree; how many colors are there on one leaf? What shape is it? In what pattern do they grow on the branches? Is the top side different from the bottom? Can you see the veining? Applying that level of observation to everything around you fills up a lot of time.

And once you have observed it, as a writer, how would you describe it? Just thinking about how you would put it into words can help hone your craft.

You can apply the same type of observation to your internal self, too. For instance, what is this experience you identify as “boredom”? How does it actually feel? Is there a physical sensation connected to it? Where does it come from? Do you attach a positive or negative value to it, and if so, is that valid?

It’s a cliché to say that although you may not be able change your circumstances, you can change how you react to them. But I believe it’s true that misery comes from the longing for things to be other than what they are. I try to overcome that by actively looking for what’s good (the bright side, if you will) in my situation; things I can be thankful for. The bleaker your current situation, the more challenging that effort becomes.

My whole life, one of my greatest joys has been learning new things. So I ask myself, what can I learn from this? Or what have I already learned, without noticing it?

I hope your time having to rest both your body and your brain is short enough that your question becomes moot. But if not, maybe these thoughts will give you something to do in the meantime.


I’m trying, Gay. It does not come naturally.

Patience is a virtue I don’t possess

Water drops. Text: How to survive Boredom. Not very well. Alicia Butcher EhrhardtWHAT AM I SUPPOSED TO DO WITH MY TIME?

I apologize to God every day for the time I’ve been given and have wasted.

I’m not a big believer in just letting time float by, which makes this akin to the sin of laziness.

I don’t mind hard work – never have – and always intended to work hard my whole life, to use my time wisely, and to help others: family, friends, community, nation.

I always felt, when I was young, that I could work my way out of any dead end, find a way to proceed from where I was to where I wanted to go.

I trusted that there was a purpose for me, and I tried to discern that purpose. Since I seemed to be able to handle math and science better than my peers, I determined I would be a physicist. After that, the PhD seemed a useful next step – I would do research. There was a paucity of women in hard science, so that must be my goal in life, what I was meant to do, and I enjoyed it a lot of the time, too.

It turned out I liked programming computers, and I preferred doing so with a worthwhile use for all that power: scientific computing in between the experimentalists and the theorists in my chosen field fit perfectly as a home.

Even when I got sick, I found ways to make myself useful, and that gave shape to what was left of my life: kids, husband, home – the energy went there. Instead of spending time and energy getting kids to school at the same time with a lunch, we homeschooled, and the science was poured into projects and fairs, competitions and internships.

As the kids needed me less, I taught myself to write fiction, poured into writing what I could spare.

Healing? Feels like a complete waste of time.

In a week it will be three months since they finally figured out what was wrong and installed the magic third stent in the right place. It’s been longer since the beginning of the whole thing, much longer if you add the three months of coughing that started last Nov. 1.

I am trying hard to be grateful for being alive: while there’s life, there’s hope.

But this status right now, waiting to see if I will even get back to that very basic writing level I had over half a year ago, having days go by without producing anything, week after week after week, feels not like healing, but like waste.

I can force myself to do a few things when they’re critical – but the ones I need to do with a bit of a brain are on the list of things piling up by the day.

And I can’t force myself to write fiction. It is a higher ability which can be encouraged but not ordered, and it had disappeared completely as of over a month ago, with the zombie brain that came from the last, unnecessary, drug: clopidogrel – generic Plavix. I stopped taking it two weeks ago, and it took ten days before I could say it was letting go of its grip.

I’m not back yet. All my schedules and timings are off. It takes me far longer to have the brain click on – and it stays on for a very short time, and then clicks back off.

So I wait, and another day goes by with nothing to show.

Exercise? A joke.

My online CFS friends tell me it can be four months before I will even see the beginning effects of my tiny bit of exercise. The exercise? Eight minutes, three times a week, of deliberately sub-aerobic recumbent rowing motion for arms or legs, in four 2-min. bursts, separated by 4-min. rests. Even I can’t see how that will add up to anything in four months, since I can’t increase it, as I barely tolerate it now. It will be two months in a week.

Without the clopidogrel, there is no huge pain surge after the exercise. But there is also only the slightest hint that I will be able to increase the intensity. I’m grateful for the eight minutes – but it is pitiful.

I do my exercise – missed one day because I got too much walking to be functional later – because it is the one thing I’m doing which the doctor told me to do. I was trying to exercise before I found out one of my arteries (I don’t believe the other stents were necessary) was almost blocked, and it hadn’t been going well, for what now looks like obvious reasons. So I will keep that one up, hope for improvement, and be prepared for it to take a long time.

I haven’t tried a bike ride yet – I could do that before, but I have a residual ‘vertical instability’ feeling from the drugs, and I’m not sure I’m safe yet.

Which still leaves me with 17 hours a day to ‘use’

And during which I’m still tireder than I was before, which makes no sense to me since supposedly I have better blood flow!

I have been bored out of my gourd. I can’t read – that uses energy I haven’t had. I can only watch a bit of TV in the evening – two shows, and I’m tired. From watching the friggin TV! I can’t do useful things – no energy. Though I’ve managed a couple of weeding sessions, sitting on the ground for a couple of hours getting those pesky strawberries and onions out – losing the complete next day because I did too much SITTING. Honestly – it’s appalling.

So what HAVE I been doing?

Writing. The journals for every day since I got out of the hospital now include 62,000 words; and the auxiliary material – drugs, stents, papers – another 36,000. About 5% of that is time stamps; the rest is a good size novel. Boring and repetitious, but it has allowed me to see patterns, which identified the side effects – and the consequences of drug changes. I haven’t had the energy to report the side effects to the FDA – a huge item on my to do list.

Reading. I forced myself to read that bunch of scientific papers (okay, SKIM, not read, looking for the necessary parts – because things were getting worse by the day in the side effects department, and I needed to get off drugs). Unbelievably exhausting – but I found what I needed – thank you, Dr. Google and online medical papers.

Blogging. I think I’ve put out around ten posts of about 1500 words each, turning some of that journaling into semi-coherent pieces of description of one or another topic in those journals.

Surfing. THERE IS NOTHING TO READ ON THE INTERNET. I don’t know where most of the content went, but it seems WAY down from when I started educating myself on self-publishing back in 2012. Several prominent bloggers then have either stopped posting, or have cut way back.

Games. No, don’t get excited – I haven’t had the brainpower for real games. Sudoku and Drench, a simple flash game, things I can play rather mindlessly (even the hard Sudokus which I use to gauge mental speed); very occasionally Bee Cells on my Color Nook – the only thing I sometimes charge it up to take somewhere (I can’t leave it charged – no ability to stop playing).

Sleeping. Night runs 6-7 interrupted hours; and I’m still aiming for 3-5 half-hour naps during which my brain dumps the junk (I call it ‘mental dialysis’ – used to work much better). I meditate during the naps, keep the heart rate and blood pressure down, calm myself, get through.

Sitting. Here, at the computer, waiting each day for my brain to come back. Getting an hour once a week up until quite recently. Now I’m up to an hour every second or third day. Note that it takes me 5-6 hours to GET that hour, and involves rituals having to do with Diet Coke, food, naps, and what I’m allowed to do while there is any possibility the brain might visit that day (mostly that surfing, and the leaving of comments if there’s ANYTHING I can contribute to a discussion).

Can’t: listen to music – it hurts my ears. Do anything artistic, even coloring in a coloring book, because it seems both boring and pointless. Embroider. Sew. Clean. Work on getting this house ready for market when my assistant is here a few hours a week. Talk to people – phone, video, or in person are exhausting. Leave the house – I think I’m up to once or twice a week, and pay for it, and most of them have been visits to the you-know-whos.

There IS no solution that comes from without

I don’t need pity. Suggestions are pretty useless in the present conditions, though they have been lovely from people showing concern.

All I can do is HOPE that this extremely slow process – doing what I can, exercising my 8 min. three times a week, continuing to eat carefully so it doesn’t set off the new gut instabilities and I lose a bit of weight (good for heart and joints), praying, not giving up – will result in something positive.

I got that hour of ‘brain on’ today – and finished a scene I started six weeks ago. It isn’t me, it isn’t writer’s block – the instant the brain is on, I head for the WIP (work in progress) and get started. It isn’t depression keeping me from writing (though I’m rather depressed about the situation, it’s just that, situational). And it isn’t even dealing with the post-traumatic stress – I’ve done that, I’m doing that, and without the drugs in my system some of the more hallucinatory effects have disappeared (which proves they’ve never been me in the first place).

I can’t even eat chocolate! I tried a couple of times, made two tablespoonfuls of chocolate chips last an hour – and then was hit with a rapid heart rate and elevated temperature period afterward, each time, that has made me very skittish.

I feel like Job in the Old Testament – hopeful, yet subject to boils and all other disasters. My trust in the Almightly hasn’t wavered (much), but I sure wish I could ask Him a lot of questions.

As I said, PATIENCE is a virtue I don’t have.

I’m being forced to pretend. Got it. I don’t need to disturb my poor friends and family any more than I’ve already done.

If I’ve missed something obvious, please feel free. Pray. I don’t see what else to do.


Thank you for letting me vent. I will be happy to listen to YOU vent.

And yes, I’m still grateful to be alive, however pointless it seems right now. It CAN get a LOT worse. But then boredom wouldn’t really be the problem any more – survival would.

Celebrate May 12 International ME/CFS AWARENESS Day

Landscape with sea and mountains; Text: I may never see this in person, because I can't spare the energy. Alicia Butcher EhrhardtWITH A BOOST IN EMPATHY

I wasn’t going to do a post today – what’s the point of celebrating ANOTHER year passing with no real progress?

Mostly I keep quietly to myself, don’t leave home, try to write. Try mainly not to be a bigger burden to my family than I already am, by not being able to carry my share of the normal load of the wife and mother and daughter. I lost the ability to carry the load of the working person so long ago that it seems fictional.

But we never live only for ourselves

And even if I’m already too old to take advantage of the cure and treatment when they come – because they WILL come – I’m here to do the one thing I can still do for others: raise awareness. Raise empathy, sympathy, understanding.

Make the world a slightly better place by pointing out such obvious things as that the person who parked in the handicapped spot MAY have an invisible disability – and your mind should go there FIRST before judging, because it gets so awfully exhausting to be judged able-bodied when you know that after a short while in that store you will barely be able to make it home. And you usually don’t even go.

Fiction is one of the BEST ways to get through the barriers we set up to protect our hearts and minds

If not THE best.

Think of what Black Beauty, On The Beach, Uncle Tom’s Cabin – and countless novels through the ages that have not only SHOWN it like it IS, but have made the reading of that story so compelling that the reader becomes educated while being entertained. And I use ‘entertained’ here in the sense of the reader’s attention staying with the story until the end, even far into the night.

After she FINISHED, one of my reviewers said,

I honestly don’t know how to explain the grip this book had on me from the first. I couldn’t stop reading it, and I wanted it never to end.

When I mentioned on Goodreads that I don’t have many borrows from Kindle Unlimited (KU), so I sometimes get the pleasure of watching Pride’s Children be read in a single day, 0-984 KENP*, my reader identified herself, and said,

“Hi Alicia, I think that would have been me, because that’s exactly what I did yesterday.

You write superbly, and while I appreciate you’ll have readers hungry for more, the care and attention to detail you’ve lavished on Pride’s Children makes me willing not to harangue you about the next book. I was a bit concerned about the depth of emotion experienced by your reviewers – I tend to keep my reading on the light side these days – but I needed something absorbing yesterday and Pride’s Children delivered in spades.”

FICTION has that CAPACITY, of engaging deeply and not letting go until the author is finished with you.

And reading is different. It’s really not the same as binge watching House of Cards. You can distance yourself from HoC. You don’t become Francis Underwood (I hope).

Things you can do – free or low cost – to painlessly develop empathy:

So this is, after all the above, my Call to Action for May 12, International ME/CFS Awareness Day:

One of the things you cannot avoid if you read Pride’s Children is becoming sensitized to the plight of millions worldwide who are victims of ME/CFS. Because you live, for a short while, with what they cannot escape. (PS It’s also an epic love story)

In honor of developing that empathy, it’s a good day/month to:

  • Ask me for an electronic review copy (review optional)
  • Read the beginning sample on GoodReads or on Amazon
  • Read the copy you already have and were meaning to one day
  • Read some reviews and ask yourself if it’s your kind of book
  • Write the review you had toyed with the idea of writing
  • Buy a copy on Amazon in ebook or print
  • Lend a friend your copy, or recommend they get one
  • Borrow Pride’s Children from KU

But be aware it may change you.


I’d love to hear what you do.


*KENP = Kindle Enhanced Normalized Pages (the way Amazon counts ebook pages, which have no actual size)