Category Archives: CFS – living and writing with ME/CFS/CFIDS

Coping with the experience of having life options limited; methods of managing time, energy, brain fog, and pain; how it has changed me.

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.

 

 

 

 

 

 

 

 

 

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Fiction: the SECOND-BEST path to empathy

DIRECT EXPERIENCE BEST PATH TO EMPATHY?

En carne propia‘ – ‘in your own flesh’ – is always the best way, subject to the limitation that reflection is necessary to develop empathy, and a certain amount of facility with the concept of sharing something emotional with another human being, which is not necessarily evident in all cases of shared experience.

Having cancer does not confer automatic empathy with other victims of the disease.

And direct experience also has the flaw of actually being divisive if the two people with the same experience have reacted very differently, and they put that down to some inherent quality in themselves. This results in the ‘I got cancer, and I did X, and now I’m far better than those lazy sods who won’t make the effort to do X…’ phenomenon.

Because direct experience doesn’t include another person.

You’d think it would make people empathetic, or at least sympathetic toward the others in similar circumstances, but no.

Fiction is a largely underused way to deliberately develop empathy

The fiction-based trick is that you can be pulled into experiencing what another person – a character in a book – experiences, IF there is enough information in the writing.

On August 22, 2017, I had a guest post on Big Al’s Books and Pals, and I posted the link to that article here. The title Al chose out of the ones I supplied as suggestions was ‘Want to be someone else? Read fiction.’ Which is true, but didn’t mention empathy. My bad – I should have chosen my own title.

I had a couple of interesting conversations there with readers of the blog who commented, and that was the extent of the feedback.

I’m reproducing the whole post here:


Fiction is uniquely positioned to develop and increase empathy, because it provides a way around and under and through the barriers most people put up around their hearts and minds.

Humans think in stories. Why? Because we spend our lives learning the rules that ensure our survival.

Our brains are wired to learn in two ways: first, by direct personal experience – a hard way to learn some rules. Our feelings then cement the lessons, make them unforgettable.

And second, by empathy – acquiring knowledge through the experience of others.

For this, reading fiction is the best way to learn. The rub is the experience has to feel real for it to serve that purpose, exactly as if it happened to us. And the way we do that is through our emotions, which are engaged when the experience is ours.

Fiction is better than facts: facts have no emotional component to make them stick. We store them away, hope to remember them when we need them. Going on a hike across the desert? Bring water. Check.

Fiction is better than non-fiction: reports of the experience, say, of crossing the Antarctic in the middle of winter, are both entertaining and raise in us sympathy for the sufferings of the explorers. Poor guys!

And reading fiction is much better than video input for one simple reason: we can’t pretend video is happening to us when it is so clearly happening to someone else. Sympathy, not empathy.

And that’s the key: reading fiction is the best way we have to feel the emotions created by experiencing something as directly as possible without it happening to us. Because, as we read, we have to put in the effort to create, out of black marks on a page, the actual experience in our minds.

Listening to stories works almost as well, but requires a storyteller, and the emotional component is affected by that teller.

Reading is just you and the book.

Oh, and the author.

Most fiction invokes the sympathetic response in the reader – the entertainment value hooks the reader, and we’re off on an adventure. There is absolutely nothing wrong with this, because we need entertainment to relax after our own lives, however crazy or calm. Lots of entertainment.

But the best fiction aims deeper: to ‘grab the jugular.’ To ‘feel like a punch in the gut.’ Or the dreaded, to make you think. Which is really to make you experience, to fully engage your empathy, to make you feel as if it happened to you. To teach you. To change you.

Here is where another of the rules of life comes into play: humans hate being preached to. The preaching is an overt attempt to change the reader or the listener, via logic backed up with emotion. Usually negative emotion, fear: you are bad, you will go to hell, you must change! You are bad, you will destroy the Earth, you must change! If you touch the stove, you will get burned, don’t!

So the author without the moral authority of the preacher or the physical authority of the dictator has to be sneaky. Covert. Tease and wheedle rather than command. Better still: make you complicit in your own change. Make you want to change.

And how does the author do that? By pulling you in with superior entertainment value (remember, we need lots of stories) up front, and by layering the experience which creates the empathy for the new experience under that. Great stories, story moral picked up by the reader from being the character, having the story happen directly to him.

We then come full circle to Show, Don’t Tell. Show the character having the divorce or being attacked by terrorists or marrying the prince. If you have your parameters right, if you’re telling the story the right way, the reader has identified with the character, and the reader is getting divorced. The reader has to escape the terrorists to save the President. The reader walking down the aisle just realized the rest of her life is proscribed by royal protocol.

The author’s power is very real.

Authors don’t always use this power to its fullest, because there is a final step: choosing the purpose of the empathy, choosing the change for a higher aim: the good of humanity.

Sounds horribly preachy, doesn’t it?

What prompted this post is that I don’t like a recent way this power is being used, to push an agenda which makes me sick to my stomach: the proposal, supported by carefully crafted stories, that people who are defective/handicapped/ill should remove themselves from the world because they are a burden to other people, and that this frees the other people to go on to something better.

Disabled people already face an uphill battle in many areas of their lives. Having society go back to an earlier model of disability which says that ‘they’ are a burden to other people, and therefore don’t have the right to the same hopes and aspirations as the ‘normals,’ is a huge step backward. To encourage them to consider removing themselves is a further abuse against their rights to live and to love.

As an author of fiction, I have the following tools:
I know how to create sympathy and empathy.
I know how to appeal to men and women.
I know how to entertain.
I know how to bury something deep in the fabric of a story.
I know how to make you identify with a character.
I know how to create situations that test the limits of character and privilege.
I know how to manipulate your emotions.
And I know that ‘disability porn’ – using disabled people to be ‘inspirational’ – is roundly despised by disabled people everywhere.

By picking the right story to tell, I believe I can make you buy my premise that disability is not the end of life as you know it.

Now that I’ve revealed many of my secrets, you still have to decide whether you’re going to let me try. And then decide if I know what the heck I’m talking about.


Why repost my own post?

Because I don’t think readers of the original blog, which sends out daily emails with reviews of indie books, are used to posts that are not a review, and I’m hoping the ideas will resonate with readers of this blog.

 

Come into my parlor says the writer to the fly

LET ME SHARE WITH YOU, DEAR FLY

Let me show you around.

Let me show off the carefully constructed room I have created for myself, and I want you to see.

Constructing the tough scenes

I have spent over two weeks crafting the scene I just finished.

I have known for almost all of this century what would happen here: this scene has ONE main job.

It is a pivotal scene: without this one scene, the second book of Pride’s Children, NETHERWORLD, comes to a screeching halt.

The way I write, though, that is not unusual.

Perennial preparation

Outside my window a pair of goldfinches is systematically eating every single seed on the drying heads of the coneflowers planted just, it seems, for them and for this purpose. I never see them at other times of year – the little yellow and black birds, tiny compared to the big fat robins that eat the worms, tinier still compared to the crows and pigeons, and microscopic compared to the hawk that lives around here somewher (in themiddle of suburban NJ!), but bigger than the hummingbirds whose feeder I need to replenish today.

But for the goldfinches to have this feast, a whole host of details must have gone perfectly: the perennial plants were introduced years ago, the weeds have been removed (now by my assistant, as I can’t do much of that any more), the fertilizer was applied, and, most importantly, I have kept that same assistant from removing the drying seedheads of this year’s crop as garden debris. Yes, it would look a lot tidier, but the whole point of the garden was hummingbirds and butterflies – and the other wildlife that eats the various seeds and drinks the different flower nectars.

It is still a surprise to the writer

Anyone who reads this blog knows I’m an extreme plotter. Hundreds or thousands of pieces have pre-planned scenes (yes, there is a bit of give – I’m not a psychic) where they will ‘happen.’

This particular scene had the regular mix of other bits attached – some pieces are identifiable as recommended by Save the Cat, Blake Snyder’s books for screenwriters, and others come straight from Donald Maass’ The Fire in Fiction.

I have known about the details for the past two years.

But the details as executed, oh!

And it was still very hard work – three weeks of it – to turn this collection of plot points and character bits, events and revelations, new leads and old connections – into something that I felt would take me there, and be so real I couldn’t imagine changing any of it (now – the weeks have been nothing BUT changing the HOW).

So I can take a reader there with me, invite that reader into this scene, one of the rooms on this long house tour of mine, and have the reader feel at home and comfy in the plush padded armchair whose footstool has a hand-embroidered tapestry cover.

It is finished now

And it is real, and reliably causes my brain to load the experience.

So it’s ready to eventually share. Here’s a taste:

Andrew snippet

Don’t say I didn’t warn you. What? Where? Why? I promise it all connects.

I’m on to the next.

And the goldfinches have gorged themselves for now.

 

 

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.

 

 

Structure and me we’re old buddies

STRUCTURE – FREEING, NOT CONFINING

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

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

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

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

Structure is how I manage to write

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

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

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

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

The three-act structure, revisited

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

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

As for me, extreme plotter that I am

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

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

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

Etc.

Getting the whole to hang together

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

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

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

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

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

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


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

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


 

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?

 

 

 

 

 

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.

‘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.

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.