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.

While marking time do something different

Blue recliner - Golden maxicomfort power lift and recline chair

SOMETIMES ALL YOU CAN DO IS WASTE TIME

It drives me batty, but since I need to have 5 bars on my brain to write with it, there are many times when we are in a holding pattern.

This year, at our community’s Bizarre Bazaar, we acquired furniture, and this is the armchair I selected from what was available (otherwise we would have had to go shopping) when the rocker/recliner we bought back in 1986 when we acquired our first child had decided not to stay put in the reclining position, and I got tired of watching TV with my arms over my head to keep my center of gravity far enough back to stay lying down.

We paid the princely sum of $85, and had it delivered to the apartment, and plunked in front of the TV.

We knew from examining it in the days before the bazaar that it had an electric control in the pocket, but nothing else.

Hidden treasures at the bazaar

We didn’t know we were acquiring a Golden Maxicomfort Power Lift & Recline Chair, retail value new at almost two grand.

It had been very gently used, almost not used at all. No signs of wear.

I picked it because, in the cramped display out in the front courtyard, it was comfortable. And that was all we could tell.

The spousal unit, after figuring out we had something different, went online and snagged the manual (the electrical engineering certification for the owner is only a suggestion).

It comes with TWO – count ’em – power blocks and two controls. The silly thing has BATTERY BACKUP – in case you have a power failure while seated, the battery has just enough charge to lift you ONCE.

It will do any position from horizontal with your feet higher than your heart to gently standing you up to get you out of the chair.

Never in my wildest dreams would I go out and spend that much money on a chair for myself.

Kids?

This is the kind of chair the children buy for dear old dad.

It has a Zero Gravity-like position – everything gently supported.

It has what they call a Trendelenburg position, with your feet higher than your head and heart, and which stretches your lumbar region.

If I’m uncomfortable, I push a button and shift position a bit.

More?

One of these days I need to get me a decent DESK chair, as I spend most of my days sitting at the computer, trying to write something.

But meanwhile, you can imagine me stretched out for a couple of hours in the evenings watching The Handmaid’s Tale or Mom or Humans.

Still fiddling with the dosage of the low-dose naltrexone, and waiting for the brain fog to clear.

And managed to get several doctor appointments successfully navigated (but leaving the house for them is one of the reasons I have no energy for writing fiction), plus show Maggie off at the U. California Davis hospital in Sacramento (NOT Davis), to admiring glances from medical personnel. They have VERY long corridors in that hospital, and it would have been an even more exhausting morning had I had to navigate them with a walker.

So that’s it.

I’m at the writing position, internet blocked, several hours EVERY day, and some times we make a bit of progress, but the bars haven’t been there much.

It’s temporary, I’m sure, or I’d be panicked. I have this feeling that when the meds settle in there will be a big burst of productivity. So I’m hanging in there for now.

Even the tone of this post feels as if there were a damper on the brain.


Oh, and some totally unknown person bought a paper copy of Pride’s Children PURGATORY, which always surprises me.

Hope they will leave a review some day so I find out who it is.

I do love the interior formatting of the paper version – because the ebook is limited to fonts the reader can manipulate easily. Check it out in the Look Inside feature at Amazon.

And pray. I’m soldiering on with this LDN experiment, but it’s not guaranteed to clear the brain fog. I will probably have to get super strict with the low-carb diet. And stop slipping up.


 

Trike ride is different in California Fall

One bright red tree on a background of green and dun vegetation.

A LONE TREE DECIDES IT’S FALL IN CALIFORNIA

Stating the obvious: if the weather is ‘rideable’ all year round, things are different.

Our other constraint is dinner: from 4:45 to 7, and 6:30 on Sundays.

So if we’re going to have dinner in the dining room, the only option on Sundays, we’re missing the natural late-afternoon slot for a bike ride.

Today the spousal unit got us takeout from the dining room, and I realized that I had a chance to go out for about an hour instead of dinner, as sunset is at 6:22 today. And the temperature was down from the 80s to a more sedate 73°, which is not too hot for me, so I MOVED.

The advantage to having been here for a while is that I have a go-bag for each activity, and can be out the door with my bike helmet or my bathing suit or my singing books in about 5-10 minutes. From starting in my pjs (which I wear most of the time while writing – or fooling around on the computer) to out the door, with another 5 min. to get to where I’m going – south garage for the trike, pool, piano lounge…

I realized I hadn’t ridden the machine I actually pedal for almost a week – instead of having few opportunities for getting outside because of the energy/temperature/humidity limits my body demands, I have far more than I can afford to take advantage of.

So out we went, Trixie the trike and I

Sylvia, my long-suffering walker, got me and the backpack and all my biking junk down to the garage, scooting backward. And over to where Trixie is waiting for an outing.

The hardest part of the ride is always getting out of the garage (uphill both ways), and today no handy car came along to open the garage door, so I did it from a dead stop. Because I have to stop, losing all momentum, to push the button to open the garage door.

I think I’m getting better at the process – all these little heuristics: go as far as I can from the bottom one way; then, before it gets too steep and I can’t pedal uphill any more, turn the opposite way, go down to the bottom of the hill, pedaling like crazy, and I’ll go farther up the other side.

Sometimes that’s enough; other times I repeat until I can get to the top of the hill on either side.

And when we got to one of the side gates off the property, someone was coming in and held the door – easy out for me. New person, here two days. Introduced myself and promised to talk later.

We went out to the West Pond

which at this time of the year is a dry creek bed.

Everything is still quite green, even though the rains of California winter haven’t come yet, but the contrast was stark with the tree above (photo doesn’t do it justice) – which had decided to go full-on scarlet. So got its picture taken – before the leave drop off.

Birdies settling in for the evening, kids and dogs and dads and moms and footballs still enjoying the perfect temperature – down the greenway at Arroyo Park next to the public pool and one of the schools.

They’ve added a new parcour course to the park, if that’s the correct name (you move from station to station along the paths doing different exercises).

Not up to that yet – may never be, as the distance back to URC is enough to make me worry about keeping some energy available to get home with. Maybe some day. A station at a time. For few reps.

How does this fit in with being ill?

It irks me that all this is available – and I don’t have the energy to get everything we’re paying for – but I knew that coming in.

If they find a cure for ME/CFS soon, maybe I’ll still be able to get into shape and do more – but they need to get a move on.

Meanwhile, I do what I can.

And the psychological lift from being able to get out of the apartment and off the property with the trike or Airwheel is priceless. I was starting to get cabin fever.

Tomorrow, I’ll hurt. And the energy won’t be there, and I may not be able to write – but not getting out except in the van to church or the doctor’s office is worse.

Peace out!


Get your flu shot – I rode Maggie to the doctor’s office a week ago and got mine.


 

 

You’ll never guess what I’ve done

Alicia sitting on an Airwheel S8 (a bicycle seat on a platform with gyroscope stabilization)

ALICIA SITTING ON MAGGIE, MY AIRWHEEL S8

Start with the obvious: what the heck is that?

Her name is Maggie because she is made from a magnesium alloy.

Conceptually, think of  a ‘seated Segway-type device’, and imagine me zooming around the Davis greenway this afternoon, just to get out of the house.

In addition, I have Trixie, my adult trike:

img 0797

with her basket:

img 0798

for days when I have energy for exercise (and don’t even want to think about plugging her into an outlet).

And lastly, I have my trusted Sylvia (Who is Sylvia?), my Invacare walker (no pic).

These are the devices that I use to get around our new home (University Retirement Community at Davis, California).

Maggie requires the least energy from me.

Here’s the picture of one of her siblings (from an ad):

Airwheel S8

I bought her on Ebay for around $500. There are more, but I have the feeling they may be produced at the factory in batches. I got the two-year Ebay Fair Trade Warranty, which I hope never to have to use, and joined the Electric Unicycle Forum, so I have a place to ask questions (Maggie is in one of the subcategories). These devices are powered by electric motors, and gyroscope stabilized.

How did you find Maggie?

Starting over three years ago, I googled ‘seated Segway.’ Segway doesn’t make one, but I can’t stand for very long, and need the seat.

Also, I have very little energy, and I try to use it for my writing (you all remember my writing, right?).

I watched videos on Youtube, with my favorite being this. It is short (23 seconds) and so cool. I wanted to be her.

Then I checked Ebay, and found several vendors offering the Airwheel S8.

The rest has simply been convincing myself that I could do this. That it wasn’t the craziest thing someone my age (late 60s when I started looking) could even consider. That I should try it quietly riding around the corridors late at night (the corridors even have hand-rails – I haven’t needed one once).

Why?

But I knew I needed something like this because this community of around 350 people are mostly in four floors of a single building, and the halls are very long to get to places.

I can’t do so many things because I don’t have the energy to get to the rooms where they happen. Even going down to dinner was painful and energy-sucking; I did a lot of it scooting backward while sitting on the walker’s seat, looking over my shoulder.

I want to remain INDEPENDENT as long as I possibly can. I don’t have the energy to push myself in a manual wheelchair.

And I am simply not psychologically ready for a powered wheelchair or scooter (besides which, they occupy a lot of space, both in halls and when parked).

But what if you fall on your face? Won’t you look foolish?

Ayup.

The thing that surprised me the most was how easy it was.

Charge Maggie up (3 hours max). Push the red button on the base. Push the red button on the remote – and she comes to life; beep! Sit on the saddle; beep! Put one foot on the base, dare lift the other foot onto the other side of the base.

Ride into the living room and startle the husband. Go out and try it in the hallways. Done. Go home and wonder if maybe watching the Youtube videos taught me subliminally – or it really is just that easy. Ayup.

Show people in small quantities.

Within a week all pretense is over, and I’m showing off every chance I get – haven’t been this cool and the center of attention in decades.

Do you have to balance?

Not much. It’s as if you were sitting on a bicycle seat on a post on the ground. Maggie does the stabilizing by reading your slight tilt, and feeding power to the wheels to follow your commands: slight lean forward or backward to go (move toward neutral position to stop), press on the seat with your inner thigh to twirl.

I am far more stable on Maggie than on my own two feet. Irritating, but I have no choice – the nerves to the muscles on the back of my legs are damaged, and only transmit a small amount of my instructions. On Maggie I can literally just sit there, not moving at all.

Going for a ride

The hardest movement (gulp) was the first time I was faced with a downward slope. A tiny downward slope. I held onto Maggie and walked down it. The next bit was an upward slope, so I tried that sitting – rock solid moving slowly up the slope. The next downward one (gulp) I just rode down, just as stably. Huh. Within ten minutes I was doing the slope up and down to the underground garage.

Since then, curb cuts. The bumpy things they put there for blind people to sense (way too bumpy, if you ask me – poor blind people!). Driveways. Speed bumps!

The biggest danger is cracks in the sidewalks and between cement sections of sidewalks and streets – anything uneven. Maggie scoots over them while I hold my breath the first time. The asphalt paths around here have deep fissures, so I do have to watch where I’m going.

Inside, I come to almost a complete stop at corridor intersections – don’t want to knock any of my fellow residents down.

Enough for now

Many more things have been occupying my time, and I’ll post about some of them (sorry it’s been so very long since I blogged).

Adjusting to the LDN (low-dose naltrexone) has been tricky. Adjusting to the social life has been time-consuming.

But I’m finally writing consistently again (my beta reader thinks I haven’t lost my touch), have some control over where the energy is spent (we’ve used the pools a lot in the hot weather), and, as the dining room manager said tonight, “You seem much happier since you got Maggie.”

Happiness it is. I had a crazy idea to save my energy – AND IT WORKS!

Now all I have to do is reconstitute some of my singing options from New Jersey, here at URC, and I’m set in a good place.

Husband admitted tonight that he’s proud of me – and seems to enjoy explaining Maggie to the masses.

Stay tuned. Questions welcome – I’m turning into such a ham: I stop, demonstrate, and talk about Maggie anytime someone smiles!


Pride’s Children NETHERWORLD is proceeding. Prepare by reading PURGATORY – I haven’t had ten seconds for marketing, and the readers have been commensurately few. If you like it, please recommend me to your friends.

And I’m working on getting the Prequel short story TOO LATE published.


 

New after a year Low-dose Naltrexone

Baby coffee plant with around a dozen leaves in a blue and white ceramic pot

I WOULD RATHER SAY I’M WRITING REGULARLY

but the reality is different: and I have a temporary good excuse.

BTW, WordPress is giving me a hard time here, but the photo above is a picture of one of the coffee bean plants I’ve managed to keep alive since they were given to us by one of our new neighbors (as babies). I guess you could call them toddlers now.

I’ve named them Castor and Pollox. One of these days I will figure out which is which, but they came out of the two halves of a single coffee bean, so they will always be twins.

Our new place faces north (we picked it that way so I can sit by the window every day), but there is an indentation, and there is a window ledge which gets sun in the morning. The plants have been much happier (How does a plant display ‘happy’? It grows.) since they get some morning sun, even though coffee plants grow best in shade.

They get the same treatment my houseplants did in New Jersey: if they live, I water them once a week or so, and they are allowed to continue living.

This is true of the twig that came with a flower arrangement a while back – because it had perky green leaves, I continued to water it, and I think it’s still alive, probably with some rooting going on in the block of florist foam that holds it. One of these days I’ll plant it. If it’s still with us.

Something has changed since the move.

There are a lot more people here, and trying for a minimalist experience – having dinner several times a week with new friends, is challenging for someone like me who used to try to limit leaving the house to twice a week.

Because I now have the pools (have to use them on these hot summer days) and the adult trike I just bought from a resident who is 91, and isn’t planning on riding it any more.

And an occasional concert. And a Mass/communion service twice a month. And a very occasional resident’s meeting or management/resident meeting or…

It isn’t the time commitments

And the occasions are all pleasant, not too taxing (for the normal person) and something to do.

Plus the many decisions (we bought new mattresses!) involved in having a new home (I got the new doctor, after about a HUNDRED hours over four weeks, to give me the exact SAME pain prescription I’ve been using for fifteen or more years).

I still don’t have a California driver’s license; it’s next on the list. I think.

But the time commitments have been far more than I had before.

And I’m trying to keep up with a few friends back home, and my family in Mexico.

What I’m trying to say is the brain isn’t reaching writing strength

as frequently as I need it to.

For as long as I need it to.

I sit at this computer every day, doing all the things that usually worked in the past – blocking the internet, taking B-1 and B-12 (I’ve now added a Vitamin C pill), pacing and taking naps as needed, trying not to eat carbs (they mess with my mind – but I had dessert last night).

But the creative brain isn’t clicking on, and when it does, it doesn’t stay on for long.

I think it’s tired of me diverting its output to mail, doctors, phone calls (necessary), minor new things, major new things, and legacy stuff.

To give the ol’ brain some help

I’m trying the last ME/CFS managing trick I had saved for a time like this: Low-dose naltrexone (LDN).

It has helped many people with ME (and other things) function.

I want less brain fog.

But it may eventually help with pain and sleep and possibly some of the exercise intolerance, and maybe the orthostatic intolerance. I dunno.

I’m taking it for less brain fog – and there are no guarantees.

It was prescribed to me by a neighbor/doctor who used it with his patients.

But back in New Jersey I could still manage to write

Most of the time. Slowly. By not leaving the house. By doing almost nothing.

And you don’t mess with what works.

So I’ve had the capsules for two years without trying them.

Brain creativity doesn’t seem to be coming back, or not fast enough, or strongly enough.

Thing is, there’s a ramp up period for LDN

To avoid side effects, and overdosing, the recommendation (I have a nice FB group with supportive knowledgeable people) is to start very low (0.3mg for me), and not increase the dose more often than about every two weeks IF you aren’t having continuing bad side effects.

Because I AM having (minor) side effects – when I change the dose (so far twice). And one of those is disturbed sleep – until you get used to the dose!

All I can say so far, after a month, and two steps on the dosing schedule, is that I’m tolerating the LDN.

And that there seems to be a positive effect on several areas, small, but I can’t REALLY tell yet, and, though I can work a bit longer at a time (‘work’ defined as ‘butt in chair’), I haven’t gotten enough better yet in achieving the level of brain functioning that I need to write reliably.

Something extra: it may help with walking, some, by diminishing the pain walking now causes.

What does the future hold?

Dunno. And LDN is NOT a cure for CFS or POTS or any of the other symptoms. Especially it is not known to be a cure for fatigue or exercise intolerance.

I have plenty of time – the move was the correct solution for so many things: social isolation, shedding the requirement for house and yard and vehicle maintenance, being prepared for when we need higher levels of care (it’s downstairs, and people there are still part of the community), better weather, exercise facilities (for my poor joints and muscles)…

My best hope is that these hours on the computer will start being my happy time again, my functional time, my ‘she has a brain’ time, and NETHERWORLD will get finished and published.

I’m spending a small amount of this current time in promotion – getting more reviews – and hand-selling. I will tell later if anything comes of any of it.

But there has been a LOT of change, and it takes time to absorb change and to adjust to a new system of everything.

I’m on it.

It’s slow – but I hope it will speed up soon.

And I’m still writing every day – yesterday I watched Bollywood wedding dance videos. For NETHERWORLD.

And how are you?


 

Finding readers who must be yours

DEMOGRAPHICS IS NOT THE WAY TO YOUR FANS

I HAVE BEEN WRACKING MY BRAIN since I got the idea for Pride’s Children. In the year 2000.

Because marketing is consumed by demographics – to women of a certain age and income; to children; to men who own pickup trucks.

From SnapSurveys:

Demographics are characteristics of a population. Characteristics such as race, ethnicity, gender, age, education, profession, occupation, income level, and marital status, are all typical examples of demographics that are used in surveys.
Mar 12, 2012
Birds of a feather flock together.

I need a different kind of marker

Something that has to do with the kind of reader people are, and the type of books they pick on their own.

When I get the chance to ask, my readers usually have some of the following features:

  • They have read a lot, starting in childhood
  • They have read classics – for pleasure – and were not forced to; books such as Jane Eyre and A Christmas Carol and Pride and Prejudice
  • They’ve read good contemporary books of their times – Rebecca and The Thorn Birds and Gone With the Wind and To Kill a Mockingbird and The Complete Sherlock Holmes
  •  Their repertoire often includes good SF and Fantasy, such as The Lord of the Rings and Dune and The Moon is a Harsh Mistress and On the Beach

But some of my best reviews have come from older men, and some of my best readers are young women, and my incredibly supportive fan is Marian Allen who is in my general age group.

How on Earth do you call that a demographic?

There are hints

One reader told me he had learned a lot about himself, and would be rereading.

Another has told me he was surprised to be pulled in.

Others have mentioned liking my writing.

Someone wrote:

you have managed the best instance of “the story is not finished, but this segment of it feels finished” that I have ever encountered

Many start, and put it off because they find a density they want to read slowly – and I wonder if they ever get back.

My return visit had me entrapped in Prides Children and I haven’t GOT TIME, but maybe just a little more…supper time… must go…one more section… but just wanted to say its VERY GOOD, and what an ironic and sharp eye you have for le mot juste, and the silence pregnant. Very enjoyable, no sign of the damaged mind but I resonate strongly with your main character’s memory lapses and undefined connections of perfect lucidity once connected for the more lumpen Elise! I have not yet reached her TV appearance but it beckons. [italics mine – the TV appearance is very early in PURGATORY!]

I poke at it with the damaged mind

I wonder why there hasn’t been more recommending to friends who read.

I wonder when Elena Ferrante’s mystique is debunked, and suddenly her work isn’t as good.

I wonder when there should be a niche for disabled/chronically ill authors, with a little bit of slack from the establishment – and they tell me they are not taking indie self-published authors, while there are few in the category who get published by the traditional publishers. A pro bono approach I could submit to.

I wonder when I watch younger, healthier authors putting gobs of time into keywords and marketing and boxed sets and book magnets and publishing more books – and there is no way in h-e-double-hockey-sticks I can do any of that.

In this, my model, if you like, is John Kennedy Toole, who didn’t do any of that, because he was dead. A Confederacy of Dunces was pushed by his mother after he died by suicide, and won a Pulitzer after it attracted (was forced onto) the attentions of an influential writer, Walker Percy.

I need a Mentor, an Influencer, someone with a Voice

And haven’t a clue how to get one.

I need to ‘go viral,’ when that is as intangible as you can get.

I need to do only the writing, and am told over and over that all authors want this, and should get off their duffs.

I think I would do a great deal better on the writing side if I had some confidence in ideas which might pan out – and that I could actually do.

I listen, I learn, I think. I follow, I read, I think more.

I’ll figure it out – or literally die trying. Morbid? Realistic?

I’ve started a hundred tiny brush fires, at great expense in time and effort. One of these days, one will burn down the fences.

And if you’re in one of my categories – or can add to that list – please let me know.


Thanks to Stencil for the ability to make graphics.

Also let me know if WordPress is causing you grief by putting in ads; supposedly the ones on a desktop go below the posts, but I understand the ones to mobiles can be intrusive.

Resetting your writing after a break

AND YOU HAVE TO GET BACK TO WORK

Even when there are still aftershocks to contend with, and the normal has skittered sideways a bit, there is a time when you can’t keep reacting to interruptions constantly with the fight or flight response – and you have to settle down and figure out where you are and what has changed and what has not.

And, in my case, get back to writing.

I labelled a file ‘REDEFINING my life at URC >5/24/19’ and set to work.

Where was I? What was I doing? What was next? These are questions which I’ve been attempting to answer on the fly just to get some writing done in the interim.

But I promised myself I’d do something more organized an more formal asap.

The time is now – if you can

Otherwise the trial will fail – and you’ll get endless opportunities to try again.

But eventually it happens.

You start to realize you’d forgotten many of your own notes. But there they are. And you forgot your own plotting decisions – which will have to be redone, except… here is the file.

I do this periodically.


From October 2012:

Jamming the creative process: RESET to break the jam

Sometimes what keeps me from writing is not procrastination nor ego nor fear.

It is simply that ‘things’ – writing, life, house, … – have become so disorganized (and behind) that I can’t think, much less be creative.

Time gets spent, not in getting things done, but in thinking about getting things done. Thoughts go round and round, never settling long enough in one area to get that area started, much less finished.

How is the creative process affected?

By its main requirement: creating requires a free and nimble mind.

No further writing or editing on the WIP was getting any attention of QUALITY. Scheduling time for writing, blocking the internet by using Freedom, and all other methods aimed at the symptoms, rather than at the root cause – logjam – FAILED. Quite miserably.

The problem is analogous to computer mainframe usage in the good old days, when, to avoid a single user glutting the machine, the computer would ‘roll out’ an image of the core with a particular user’s program and all the user’s data, and ‘roll in’ someone else’s program and data. (Rolling in and out used a small amount of CPU time.)

Then it would compute for a while, and repeat the process with the next user in the priority list. If the algorithm wasn’t managed carefully, or there were too many users being allowed into the queue, the machine could get stuck in a place where all that was happening was sequential ‘roll out’, ‘roll in’ – but no actual work got done before it was time for the next. All the CPU’s time was being used to manage sequencing of jobs, none to doing the actual jobs.

No one’s job got done – and the CPU was busy all the time.

That is how my brain feels when things get too messy.

I can’t actually roll a job in and get a significant part of it done – the competing jobs are clamoring for brain/CPU time.

At this point the only thing to do is declare a reset – everything stops. Then only the top job or two are allowed any traction (typically one of these jobs is ‘TAXES’), everything else is blocked out, and, after clearing the logjam (i.e., ‘Filing taxes’), work is evaluated, rescheduled, cleaned up, dejunked, and otherwise processed before resetting the queue.

Something innocuous can start the jam: a visitor blows into town and occupies prime time space for a day or two (with, for us CFS folk, the several-day recovery that is non-negotiable). Or a new, shiny program beckons, promising to solve some long-standing problem and make future workflow more efficient. Or tax planning requires that all charitable contributions to be charged to the current fiscal year be RECEIVED by the intended organization by Dec. 31, not just MAILED (as it used to be), moving the paperwork time into the Christmas time-frame with a vengeance (instead of being done in that nice post-Christmas lull before New Year’s Eve).

Or [fill in here the life events that, by themselves, could have been handled, but collided with… to create the felt-like effect of a logjam, interlocked fibers].

It doesn’t matter what caused mine this time.

If you’re really curious – ask. And be prepared for long tale of woe…!

Ahem! The solution is to RESET – and that is what I’m doing.

So: I absolve myself of guilt (no one would do this to herself ON PURPOSE), and RESET. I put the editing on hold for as long as this one takes, get extra rest, do the top project or two.

And: we’re back in the writing business (I’m assuming this post – except for the mixed metaphors – shows coherent thought).

Editing sounds positively enticing – I can’t wait to see the final version of the current scene.


And how does that connect to what I’m doing in 2019?

Current editing is Scene 26.2 in NETHERWORLD.

Current writing is Scene 26.3.

And I would say the current tale of woe is the continuing saga of replacing things we had in New Jersey that worked fine (such as doctors and driver’s licenses) but we still don’t have here. One by one.

And I no longer do taxes since hubby retired!!!

But I’m writing. And reconnected with most of my research and organization files. And stuff I didn’t even remember was there. Phew – it would have been a lot of work to re-do some of that!

What do YOU do when you need to reset YOUR life?

Can you relate to imperfect characters?

HOW FAR MUST YOU MORPH?

Readers have always been able to switch gender; well, female readers have often had to – there wasn’t much to read with positive heroines when I was growing up, not in popular fiction – it’s amazing the number of women scientists who pay tribute to Nancy Drew in their background!

I’m sure the number is dropping, because there are more role models, and some writers deliberately create unrealistically powerful young women as characters, hoping to up the ante. (Yes, I’m perfectly aware of all the advances made in opportunities for women; but that the situation for women in physics, for example, is not much different from what it was in the 1970s when I was in grad school.)

The ability to imagine yourself as a shape-shifter or an alien is part of being a reader – and even more important when a lot of the characters are not like you.

Diversity is the Holy Grail

Though more honored in the breach than in the observance, still.

And readers are only willing to go so far before they’re not interested, requiring a modicum of something they can identify with.


Which brings up a post from late 2012:

Does your character make readers uncomfortable?

When I set out to tell the story of Pride’s Children, I was originally driven by a sense of the unfairness of society toward those who have most need of its kindness.

Specifically, your DISABLED character?

There are two USUAL ways to deal with disability in a character: as a decoration or as a problem.

The first – a ‘feature’ of a character – gets mentioned every once in a while, but doesn’t seem to stop the character from doing most of the things ‘normal’ able people do. And it mostly leads that character to be a secondary character, a sidekick, the ‘friend in the wheelchair.’

The second leads to ‘inspiration p0rn’ (avoiding search engine problems here), and the solving of the ‘problem’ consumes the space dedicated to the story, with inspirational results – problem solved – or, sometimes, the character’s death (in a disturbing trend, by suicide while making life easier for those left behind).

Ignore the fact that suicide has a horrible effect on the people left behind. Most of us know of someone close to whom that has happened, and know they would do almost anything if they could go back in time and help.

Disabilities in real life

Disabilities are far more abundant than people think. If you count all disabilities – and I do, of course – estimates run over 20%. Don’t forget the invisible ones: FM, mental health issues, pain, CFS, non-visible genetic ‘abnormalities,’ a thousand things that make life difficult for the disabled person, but generate wrath in observers who watch them use the handicap parking space. Don’t forget old age and its common memory and mobility problems.

The counting is made difficult because of a human tendency to hide problems if it is at all possible, so you will not be ‘different’ or ‘other,’ and attract unwanted attention. Presumably there was some evolutionary benefit to getting rid of tribe members who would slow you down when your tribe was in the hunter/gatherer phase (a rather long time ago).

We ‘pass’ for normal/able as long as we possibly can, which also makes us suddenly appear very disabled when we can’t pretend any more.

Animals do it, too – everyone knows of a pet who didn’t let its owner know something was wrong until it was far too late to help. Wild animals do it so as not to appear vulnerable, as the weak and the sick are noted as easy prey.

But there is a different way for a writer: reality

I have taken the step of writing a disabled MAIN character, with a significant disability, which she ignores as much as possible, and bows to when inevitable.

For this disabled character, writing is a job – and she’s been successful at it, very slowly – and by staying hidden from the world.

An Amazon reviewer:

…while much of the plot centers on the cautious romance, Pride’s Children is also about a writer’s way of interacting with the world, living with a chronic condition (CFS – … I realized that I couldn’t think of any book I’d read, recently, involving a character with a disability or chronic illness – a significant hole in terms of diversity), and the struggle to remain balanced and kind when new people and routines enter one’s carefully-ordered sanctuary…

Disability is a learning experience

Those who are or become disabled have a steep learning curve: everything is harder. Moving, learning, thinking, being independent, even making new friends – all these are more difficult the farther a character is from the norm.

And the effects are interwoven: difficulty reading means trouble holding a job, getting to that job on public transportation or by learning to drive. No disability is purely one thing you cannot do.

There are few disabled characters in fiction (which is why they stand out) because writing them is extra effort. It’s easier to write about kickass heroes and heroines who tough it out through thick and thin and keep on ticking.

Just tonight we watched, in the same show, a character get stabbed in the back by an enormous kitchen knife embedded at least four inches by the blood shown carefully on the blade when it was pulled out by the stabbed character, who then went on to limp a bit while he walked around, interacted, and finally was not shot by the police detective – and who survived with no visible effects by a short time afterward; and a character poked at in the stomach by a little knife who died instantly. Neither of these seemed at all realistic – but the plot required one survivor to talk and talk, and the other to be removed quickly from the scene.

In the same way, disability in fiction is mentioned when necessary to make a quick plot point – but not there pervasively.

FICTION = EMPATHY

I have written about how properly-constructed fiction is uniquely helpful in creating empathy in humans because it allows them to live alongside a character the life affected by the choices the author has made (type ’empathy’ into my search box).

They do, however, have to read said fiction, which means it has to be surrounded by the best entertainment the writer can provide.

I’m not surprised there aren’t more disabled characters, but I’m disappointed that indie isn’t more of a place where, since the big publishers are not supervising the product, there are more disabled, diverse, and simply ‘different’ characters and stories.

But there is that pesky thing about having to write well to sneak the empathy bits in under the radar. It takes more space, more words, more time.

It is MUCH harder to market.

I still think it’s worth it.


Do chronically ill/disabled characters make you squirm?

Still writing with ME/CFS years later

THE MORE THINGS CHANGE, THE MORE THEY DON’T

This is ME/CFS month again, for my nth time – and May 12th is ME Awareness Day again – as I’ve blogged about for several years now (since we got more activists and activism going, including Jen Brea’s Oscar-nominated documentary, UNREST).

And nothing much has changed – I’m still sick all the time (that’s what chronic means), and have no energy, and don’t get much done, and don’t get what I want to do done, and all that jazz.

So I found a wayback post from Feb. 2013 that describes almost exactly the same thing I still live with. No capacity to learn – or rather, no capacity to retain enough energy to make good decisions.

And I’m six years older, which doesn’t help (unless you’re 13 and desperately want to get away from home). We ME/CFSers are not spared the vicissitudes of aging, and are probably much less capable of putting in the effort that might stave off the ravages of time (exercise, putting energy into good living and good eating, etc.) than those whose life circumstances are easier.

I say easiER, rather than easy, because Life isn’t ever easy (ask any cosseted princess).

Remember I don’t do much editing on these oldies but goodies, but it is proof of nothing much changing (except moving to California!!!) yet.

I’ll let you be the very first to know if something improves!


Writing with ME/CFS #1 – surfing the web for THE ANSWER

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CAUTION: These posts tagged CFS are a product of my struggle to write in spite of a chronic illness that has brain fog as a side effect. They are probably not interesting except to people who live with/try to write under similar circumstances. They are not intended to be whiny – though they will often sound that way. They are intended to be factual, and to help me find workarounds.

I wouldn’t bother except this is my blog, and I need an outlet, and a small subset of readers may find something helpful. Writing helps me sort things out. You have been warned! Welcome!

********

The mornings when the psychic energy to block the web is missing,

I roam the small set of sites I follow, looking for someone else to give me words to read.

Today’s excuse was that DH called me from work before my brain was on: he’d left important papers in the front hall and a frantic romp through two computers and a memory stick were required to email him usable copies. Other days it’s been a call from a doctor’s office requiring me to do something immediately, or a call from my dad needing a bank transfer…

I’m seeing a pattern here: whatever the attention-consumer is must be dealt with RIGHT NOW. PWCs (persons with CFS) have a much smaller amount of usable psychic energy – which I will define as the ability to MAKE myself do something as well as the ability to ACTUALLY do something – than normal people. It’s part of the brain-fog problem. If I could jot the interruption on a sticky or my ‘gathering’ sheet or type it into Things – and deal with it in the normal course of business (maybe today, maybe not until next month), it would lose much of its power to consume. But I can’t – this is an EMERGENCY and must go to the top of the list. Worse, it must be done NOW.

Somehow, I come up with the energy to deal with what needs to be done – and it gets done – but there is an aftermath, a surcharge if you like, and the accomplishment is followed by a period of being awake but completely non-functional. We PWCs really can’t afford adrenaline – it takes much longer to metabolize it.

During that aftermath I often surf the web.

I’m looking for THE ANSWER. What’s the question? Who knows – who cares? Something in me wants someone else out there to tell me what to do, now, in such an authoritative way that it drags my mind out of the hole and gets it to work again.

There’s nothing there. I have a file where I record the ‘nuggets’ gleaned from surfing, the things I am absolutely grateful I have discovered. A short list (Dec. 2012-Jan 2013):

I: Standing desk, walking desk [PV + comments]          3:02 PM
I: Boomer Novels – and Boomer Cafe website [PV]       9:41 AM
I: Sworn Secret,  Amanda Jennings [Dead Guy – Lynne Patrick]
E: Friend – Have started Freedom: IT CAN WAIT        11:17 AM
I: Sharon Reamer. Good book video, cover [PV ->]    12:27 PM
I: Dropbox – saving your information         [PV?]          12:27 PM
I: Reviews [PV], bloggers charged with defamation    12:29 PM
I: Decision fatigue – and sugar!

I: means the nugget came from the internet, E: that the information was in an email. PV is thepassivevoice.com.

Looking at the list,

I can see that many hours of surfing went into relatively few really critical pieces of information – and ALL of them could have waited. Until the day’s writing was over, at least, or until the next day. In the case of late ones, I was surfing instead of going to bed, thus mortgaging the next day’s writing, for the relatively small pleasure of today’s surfing. I KNOW these things – it’s a little daunting to see that my precious nuggets are so irrelevant.

Back to the question of Why? I think it is because, like playing solitaire or sudoku or a million other games, the ability to do something that looks as if I’m using my brain – ie, being human – is required to keep me sane. And I have used up the ability to be creative, so I settle for the APPEARANCE of creative: Look – I solved another HARD sudoku puzzle! I’m ME. I’m functional!

This is data.

I don’t think I’ve put it quite this clearly before: human brains WANT to create, to ‘do something useful with their time.’ If I can’t have real, I will settle for apparent. It’s Catch 22: if I have the energy to get myself out of the loop, I’m not IN the loop. If I’m IN the loop, I don’t have the energy to get myself out.

I’m learning. I can restore SOME functionality when I can put myself down for a nap. Afterward, most of the time (depending on the surcharge), there is some restoration of functionality for that day, that time – I may even get something done.

THE ANSWER: to be normal.

It’s not on the web. It’s interesting that after 23 years I still look for it. The brain wants what it wants: to be the way it used to be.


It’s over 29 years now.

Still here, still broken, still trying to find an answer I’ll remember when the brain refuses the jumps.

I am so boring!

Why do you surf?

Gather scene plot points before writing

WARNING: FOR PLOTTERS

I have no idea how pantsers (those who write ‘by the seat of their pants’) decide what goes where in their books, or scenes, so if you’re a writer of that persuasion this post isn’t for you!

Even plotters have many variants

Some plotters are outliners: they construct a detailed outline for their novels, listing events in each scene, and, when they have a clear enough picture, follow their characters along and write down how they talk to each other as the events unfold.

There are writers who plot part of the time, as necessary, when they get stuck or when a section has to have a chronology to make sense.

And then there are people like me (I hope I’m not unique!): decisions are made in advance for every little thing that could happen in the whole story – an interaction between two characters about their Motivation; the introduction of a theme; the next step in a plot sequence that spans the whole trilogy…

I don’t know if I would have been this controlled had my brain still functioned the normal way – I didn’t write novels ‘before.’ But it helps me function when the amount of work I can keep in my head at a time is about one scene’s worth. At times, one beat – a section of a scene. My problem when I don’t do this it that the same ‘good idea’ will end up, in slightly different words, in more than one place in the novel!

So, necessity or temperament:

I call us Extreme Plotters

All this goes into the scenes in the list. Each scene has its little laundry list.

And then the improvisation can begin – everything is ready but the words.

And that little bit of ‘business’ will occur in only one place in the novel – and I know where and why.


From January 2013 (but I still use it every writing session):

Appreciations: Stuff that has to go somewhere

There are marks that a story has to hit to be considered complete.

For example, Blake Snyder, in his Save the Cat series on screenwriting, lists what he calls beats (on his ‘beat sheet’), things such as Opening Image, Theme Stated, Catalyst, and Dark Night of the Soul.

James N. Frey, in The Key: How to write damn good fiction using the power of myth, has a similar set which he calls a stepsheet that includes marks to hit such as the Call to Adventure, the Confrontation with the Evil One, or Obtaining the Prize; and a set of mythological characters to encounter such as The Armorer, The Evil One’s Sidekick, or the God with Clay Feet.

Other theorists have their own sets of points to hit for a novel or screenplay, and other structural systems such as Dramatica have their own collections of ‘pieces’ to include somehow in the finished product.

Finding a home for the pieces in the list of scenes

The last part of my Scene template is the section where all these systems have space to assign their points to particular scenes. I call these appreciations, or apps, from the original Dramatica version terminology.

Many of these systems have points in common, and are different ways of interpreting features that stories need. Odds are that people evaluating a novel or screenplay for acquisition will have their favorite system- and there is no reason why different systems can’t be accommodated within the same story and story structure.

The appreciations remind me that somewhere within THIS scene, I have elected to show, say, my protagonist preparing for the quest ahead by consulting The Wise Woman, or that this scene is the place to illustrate what Snyder calls the ‘All is Lost’ moment.

The illustration (‘encoding’) of the appreciation could be a bit of description or setting, a phone call and one or both sides of the ensuing dialogue, or a character’s thought expressing the theme for the reader. My choice – and where the writing and the artistry happen.

There are an infinite number of ways to illustrate any appreciation.

When done, a list of the appreciations showing the required points, scene by scene, could show an editor or studio exec that the story follows his favorite system* – and ‘validate’ the story’s structure. The point is that if the story needs to have a ‘consultation with a Wise Woman’ in it, I need to know which scene I’ve chosen to put that into. When I’m writing/I’ve written the scene, I can check the beat/story point/mark off my list once it is illustrated somehow. It is bookkeeping – that’s what templates are useful for.

The remaining few lines at the beginning and end of the Scene template situate that scene within its Chapter, and keep track of the action on a larger scale.

It looks like a lot of work to create and maintain this much structure. I think of it as preparation before going into battle. I know that when I reach the end, each of my scenes has done its job, and I haven’t left things out.

And it frees me up to do what I really want, which is to write the scenes: the stage is set, the actors are costumed and ready, and we get to Action!


*This is not an original idea – that you somehow include different ‘systems’ into the same book or screenplay – but I can’t remember where I ran across it. It makes sense – many systems are different ways to accommodate the same structure, and are not necessarily incompatible.

Thoughts?


 

Plot quirks as much as holes

AND HOW WOULD YOU KNOW?

‘Missing’ is an odd concept

For a visual or graphic artist, there a billions of colors – digitize the spectrum as finely as you like to get as many distinct numbers as you need.

Of course, you can’t use them all.

And at some point the human eye can no longer distinguish between the shades.

A complete scene is another odd concept

That’s where the art comes in, for each writer, in deciding how much stays, how much is irrelevant (including whether or not to use scenes at all, but that’s getting a little too experimental for me).

From January 2013 comes an answer that turned my brain topsy turvy:



Upending plots to find holes

I had an interesting experience recently which gave me ideas about finding – and solving – plot problems. In the course of playing too many games of Free Flow on DH’s new iPad mini, I solved all but a small set of the 14 x 14 levels included. It irked me that, no matter how many times I went back to the remaining small unsolved set, even starting completely from scratch, I couldn’t find the trick to the solution.

A minor problem, you say. Agreed. But games can be useful (I know – this doesn’t justify all that time spent gaming) – or humans wouldn’t have invented them, and wouldn’t get so much stroking from them, so much pleasure, that they can become addicting. There is a sense of completion that releases endorphins and other good brain chemicals when a puzzle is solved.

So, I continued to come back to this set of unfinished puzzles.

But it wasn’t until, in desperation, I turned the iPad upside down that I found my answers: even though I had started each level from scratch, the orientation of the dots (you are trying to connect each colored dot with its mate in such a way that all squares on the board have a color in them and NONE of the squares is EMPTY) had locked into my brain prematurely, and I literally could not see them in a different way.

It actually HURT my brain to turn the iPad upside down, and to view each puzzle WRONG – but in a new way.

I told myself anything that made my brain hurt must be good for it (on the theory I hold that the brain is a muscle-like object, and it must be exercised).

I deliberately tolerated the stress – and quickly solved the remaining puzzles I had been struggling with for more days than I care to admit. Immediately. The skills I had developed for this particular little game had settled too soon into working on the default orientation – a technique that got me successfully through most of the 750 puzzle levels that came with the game – but not all.

I’m doing something similar with the scenes I’m revising now:

I have text for these scenes, text that I like, and a flow through the plot that strokes my brain (we all write, first, for ourselves), but it isn’t good enough.

Revising in place, just taking the words that are there, the order of words in a scene, and making them better, is good and useful and satisfactory – after all, I worked hard to write them originally.

But it doesn’t solve all the problems. I’m stuck, in some scenes, with a feeling that I haven’t done my complete job, that there are unexplored empty ‘squares’ on the grid. A feeling that if I notice a tiny void, a reader will, too. My brain hurts.

But the reader can’t fix the problem. That’s my job. If my writing isn’t satisfying me, it has no business going out into the world.

So I’ve been taking the elements of a scene, and going back to ‘start.’ Rearranging the order, re-thinking, re-visioning.

Letting my brain hurt.

Turning the scene completely upside down, asking beginner questions: What does this scene do? Why is this scene in the book? What can the reader only learn here? Even, Why the heck did he do that?

I’m hampered by the fact that I can – as an end result of many years of reading – turn out clean copy that LOOKS finished with relative ease. And once it is fixed in black and white on the page, it is very hard to question what looks ‘published.’

It takes time. It isn’t strictly necessary.

But if I identify the plot problems – the little bugs which irk the brain – those empty squares – and solve them, I get the endorphins. And a scene I have to admit is vastly better.



The interesting part has been that I have found extremely few places where I want to go back and change something in PURGATORY – which I just finished rereading.

Apparently, once I’ve got it, it locks in, and then it’s real, and I don’t need to go back. I didn’t think it would be so.


How about you?

If you’re a writer, do you find a strong stop for each scene – or do your scenes make you want to get out the editor?

If you’re a reader, can you tell when something is finished?

Just curious.

The limitations of a writer circumvented

EXPERIENCES ARE STILL POSSIBLE

This one I picked to bring forward again because I’m glad I recorded this post about getting around some of the significant Life imposes on those with disabilities and chronic illnesses: finding ways to keep the raft of experience growing even as we chop off pieces to fund our work.

I have to find a way to make the singing a bigger part of the current life.

And it is also timely, as Easter is next Sunday.

From February 2013:


I have been coping all morning with the side effects of yesterday, not being able to write, nor even look at my notes for, the current scene under revision in the WIP.

And yet, I am not unhappy.

With the limitations of CFS, I live a tiny life: I try not to leave the house more than 2-3 times a week, I say no to almost everything, and I have worked hard to create a schedule that puts the writing first (Get up. Grab First Diet Coke. Block internet for 2 hours. Write. Take First Nap. Get up. Grab Second Coke, protein breakfast shake. Block internet for 2 hours. Write. Take Second Nap. Phew – most of day is now gone.).

My house is, understandably, a disaster area. The bills get done when I am either forced to or have a functional period after the writing. Taxes, end of year deductions, holidays, occasional trips – all interrupt the flow, and take a week to recover from – and get back on schedule from. They are necessary, so I pay the price and don’t worry about it too much. If there’s energy, I write – I don’t spend it on housekeeping.

It leaves little time for the ‘life experiences’ writers need to grow – a Hobson’s choice.

But for ten years I made space for a weekly singing lesson (even though the teacher said I should practice an hour every day – and it was a rare week when I had any energy for doing anything other than singing if I had to drive myself somewhere that week). Up to 8 times a year I go to a Folk Sing on a Friday night. And a year ago, when they were soliciting new members for the tiny choir that sings at the Princeton University chapel for the 4:30 Sunday Mass I attend when classes are in session, and knowing that they practiced before Mass (rather than having a separate choir practice night, which would have been an additional outing every week), I volunteered. With the caveat that it might not be something I could continue doing.

For those who sing, I needn’t explain the joy of learning something in four-part harmony every week, however short. For those who don’t, just know that I am treated as if it’s obvious that I CAN, and that’s enough.

After a year, which I survived, we were challenged to take turns as Cantor (it’s an erratic crew due to school and other commitments, and we were down to two or three who had cantored – yesterday all but one couldn’t come). One additional training session required – I can do this: I said yes.

Yesterday was My First Time – and, minor bobbles aside, it was glorious, and made up for the loss of Saturday (preparation), Sunday (warmup, practice, Mass!), and today, Monday (can’t seem to get it together, and it’s 4:34pm). Let me say it this way: there is nothing to compare to the experience of opening your mouth and pouring sound into a properly-designed nave and choir in a stone cathedral. It is a living thing that feeds back the sound and amplifies your voice enough to fill the whole. I prayed – went for it. The feeling is a shock, the feedback amazing. The first notes of the a capella Kyrie (which I may have been a third low for – but it doesn’t matter, as the cantor sets the note, and all the rest are relative – the organist had told me not to worry, to just go for it and with it, rather than get a note from him) – me, alone, for a few seconds, and then the rest of us joined in – was an experience that is not available for money. Nor should it be. It is only available for love – and without fear.

The same for the first verse of the meditation, followed by all of us singing what we have been singing throughout Lent.

My point? That even in a life circumscribed by circumstances beyond control, there are still times when it is necessary – and possible – to say ‘Yes!’


How do you replenish?

 

My writing rules have not changed

A white notebook with some sprigs of flowers with leaves. Text: From 2013 to 2019 the Rules I write by have NOT improved. RATS! Alicia Butcher Ehrhardt

CHRONIC HAS NOT BECOME BETTER

These are the ‘rules’ I figured out way back when I started blogging.

I have moved cross-country, published the first volume of Pride’s Children, lived, exercised, eaten – trying multiple possibilities to no useful improvement.

It’s daunting.

Pain has increased a bit, and I walk less well. I’m avoiding any more surgery on my back unless 1) forced to (by a few things which can get dramatically worse), or 2) I’ve both finished all three PC volumes AND found a surgeon I believe can actually do anything useful.

Why? Because we CFS folk are sensitive to anesthesia, subject to wild pain fluctuations with surgery, and take forever to heal.

So I went back to look at the Rules, and am listing them, unaltered, so you don’t have to go look at the Archives for 2013. I may correct an odd typo or two.

Pray for me.

Contribute a few bucks to research on Dr. David Tuller’s fundraiser (he’s our wonderful journalist with a PhD in Public Health from Berkeley, where he works and which backs him up against some of the worst slanders about his abilities and motives. Why him? Because he’s been doing this for us for two years, and knows everyone and everything because he’s already up to speed. Because his research and letters, published on the Virology Blog, have been amazing. Because the other side, the fake scientists who insist I have a psychological disease, greatly fear him (they were getting away with murder until statisticians called them on it).

Rules from April 2013 – still valid:

*** DO NOT READ THESE RULES IF YOU ARE EASILY OVERWHELMED *** I AM NOT RESPONSIBLE FOR YOUR CONSEQUENCES *** YOU HAVE BEEN WARNED *** YOUR MILEAGE WILL VARY *** DO NOT ARGUE WITH ME *** YOU DON’T HAVE TO READ THEM ***

Like physical laws, like gravity, especially, these laws are immutable.

Finding my laws – and exploiting them for MY benefit, is how I survive. Which I do, erratically.

Anything else is not only really stupid, but, like gravity, results in large crashes when I fall.

I have figured out these rules in detail only the last year or two, because I couldn’t afford to know them – and their immutability – before then.

I have the scientist’s orderly mind, and the drive to understand things that accompanies it. I would have made a decent scientist. Oh, wait – I did – for thirteen years.

I want to write. I am very grumpy when I can’t write.

1.    If I am playing video games, trolling the internet, or reading far into the night, it is not for pleasure. It is because my non-functioning mind can’t make decisions. This actually has a name: Decision Fatigue. It is part of the dreaded ‘brain fog.’

2.    The only way I can make good decisions is to be rested enough. Yes, I can tell. But only, Catch-22-like, if I ASK myself – and I’m often too non-functional at the time to remember that.

3.    The only way to reset the decision-making process, for me, for now, is to lie down.

4.    The best recovery sleep is one taken just as I’m getting tired – OR COLD. It is at least 35 minutes long (the extra five is to settle down). It takes three positions: 1/3 lying on my back, 1/3 on each side. It must be: as dark as I can manage the room; horizontal; warm enough (lowering body temperature is an indicator); completely dark (use eye mask if necessary); completely silent (use ear plugs, and if the neighbor is using his industrial leaf-blower – way too often – I must add to the earplugs industrial ear protection: the earplugs alone are not enough). There can, obviously, be nothing else going on, no TV, audiobook, music. Certainly I can’t talk to you on the phone and count it as a Rest.

5.    During the nap I actively try to do all my rest-and-meditation tricks (true meditation is beyond me, but I sometimes do a little praying as I settle down, especially if anxiety is a problem (it often is)): I do three yoga ‘surrender breaths’ at least in each position, more if necessary, in sets of three. Each of these breaths has me filling my lungs to the utmost, holding a moment, and then ‘letting the breath fall out’ by opening my mouth and just releasing all tension. I – not necessarily yoga practitioners – then use all my muscles to push every bit of bad air from my body. I think this compensates for somewhat shallow breathing the rest of the time – junk in the air in the lower alveoli? – but what do I know?

6.    If I am tense or twitchy, I use those first five minutes to do all kinds of stretches – some I’ve invented myself – all lying down (unless I have a touch of sciatica – I’ll discuss that separately).

7.    It doesn’t matter if I had a nap 40 minutes ago (this part I hate). If I need another one, I need another one. Typical days without too much stress get by on two, are better with three. If I am recovering from a bad night, it can take four or five. If recovering from overdoing it (described below), pushing my limits, hitting the wall, losing it – whatever – this process WILL go on for days – regularly as many days as I overdid it; if I am VERY observant, I may be partially functional sooner – but can easily lose it again if I assume I’m back to ‘normal’ too soon.

8.    My ‘normal’ is not what ‘regular people’ call normal. You’ll see. My normal means I can get through a day with only two or three required half-hour rests – and actually get something done. (Getting something done will be described later.)

9.    I cannot work through or power through my little ‘problem.’ It would be like driving a car without gasoline, or better still, without a required oil change that is long overdue.

10.    I can choose to try to bend, break, or stretch these rules. Another one of my little ‘bad decisions.’

11. I cannot evade the consequences of having done so.

12. I am consciously trying to find the implementation that allows me to make the best choices, aware that life is imperfect, and the best choices are often not available to me.

13. Stress – of any kind – loses functionality. The loss is directly proportional to the stress, but exponential, not linear.

14. My personal limit seems to be to leave the house no more than three times a week for a fully functional existence. It is very limiting, and it is a difficult limit to enforce. I often have to make an exception to not miss my yoga class; I always pay for the exception.

15. If I leave the house, on one of those trips I may stop and do a short shopping stop: more than 15 minutes, and/or without the walker, and we are done – I must leave.

16. I can’t eat sugar or refined carbohydrates very often; if I do so, it will take four days – no exceptions – to get them out of my system. Every couple of days I may choose to do the Drs. Heller’s method of eating ONE balanced meal a day with some carbs and staying within a strict limit of ONE hour from start to finish. If I do this only a couple of times/week, exactly as they describe, I minimize its effects. Minimize, not evade – but c’mon guys, sometimes you gotta have birthday cake.

17. If necessary, I carry Atkins bars, and can have up to a couple a day. These are for true emergencies – and are sometimes what keeps me from going off the deep end, the illusion of a candybar, some chocolate and peanut. They are good for a meal-on-the-run, but if I’m on one of those, we are already compromised, and I know it. Sometimes they are the only thing that gets me home safely when I have to drive. I WILL pay for it.

18. The BEST solution to leaving the house is to get into bed the minute I get back. I’m very bad at it, because by that point I’m living on fumes, and I make very bad decisions on fumes.

19. No matter how many times I beat myself up about it, no matter how many times I fail to do the right things, I don’t seem to be able to do this perfectly.

20. I’ve been collecting some of the above data for the entire 23 years I’ve been sick. Some of it ‘clicked’ but recently – I have a bit more time to observe myself right now.

21. If I can’t get to sleep at night, I can take 1/4 of a 3mg. Melatonin tablet (which, taken as I’m getting sleepy, works best). I can also take 1/4-1/3 of a muscle relaxant (Skelaxin), which helps when all my yoga stretching doesn’t quite get the twitches of RLS (Restless Leg Syndrome) out. I WILL PAY for these the next morning with between 1/4 and 1/2 day of additional grogginess. Most of the time these methods will get me to sleep – but the cost in functionality the next day is significant. Less doesn’t work. Taken too late (I told you I’m making these decisions from the very bottom of the decision quality scale), they don’t work.

22. It takes me 2-3 days to get back on a normal schedule if I stay up too late, longer, proportionately, if I do it for more than one day in a row. Most of the time I make an actual bad choice (I COULD set an alarm, or block the internet, or turn the computer off, or put the book or the ereader game down); sometimes something occurs late at night, usually by phone, occasionally because I HAVE to finish something. The REAL RULE is: go to bed. At the same time. As I get sleepy. Like a two-year-old.

23. When I get into the lowest energy state (zombie-like but still technically awake), and caught by something that gives my mind the appearance of intelligent occupation (pick your computer game of choice, or web-surf desperately for content), I’m amazed I can even make the decision to go to bed – after hours (literally) of being stuck in la-la land. I ALWAYS beat myself up when I do this. It never seems to help.

24. I get into the lowest energy state, because, goddammit, I’m a grownup, grownups don’t take naps like two-year-olds, and I hate taking naps (you see the lack of functional decision-making here, right?), and I’ve allowed myself (sometimes by design) to get to that state by going along as if I WERE normal, and not planning when the next nap needs to be, and how many I need to take to get through the day.

25. Here’s the new rule I just figured out: WRITING helps. And having it in an easily-accessible SCRIVENER file, where I can get to it before I do the next thing, helps even more. I’ve known these rules for year, have most of them written in the more than twenty notebooks that have journal pieces, my journey as I go through life, my writing notes as I work through revisions… BUT it hasn’t been until I’ve started using Scrivener – because of its ability to have so many files for a project and not take forever to open – that I’ve started adding a section to each project where I keep track of this stuff. Now, every time I realize I’m writing the same things, and nothing is new, I’m starting to use that as an indication that I’m ready to work.

26. Writing seems to help focus my mind – that’s why I do it. But I’ve written the same words many times before – in various chunks. Slowly. By hand – which is often a good things to do (I write most of my new text longhand, and revise on clean printouts much better than on a computer screen) is TOO SLOW to capture the torrent of thoughts which flow through my head.

27. Writing LISTS seems to help focus, as well. Brain says, “We’re doing a list,” and puts stuff out in some kind of order.

28. Getting things out of my head, and onto paper where I can see them, counteracts the ability to hold only one thing in my mind at a time (see post about likening my brain to an old-fashioned computer with a single processor: I DO NOT MULTITASK well.

29. Too many things in the queue leads to total paralysis – I can’t do what needs doing for one task before another forcibly takes over the single neuron I use for thinking (the other is used for breathing, thank-you-very-much, and should not be co-opted frequently: that least to hypoxia? anoxia? death? And it usually forgets to switch back). Putting the queue on paper is the trick – I’d discovered that when capturing the To Do list manually – but only the computer list allows for editing the list easily, putting things into the right order as I edit, and modifying lists items as I go. By hand that requires re-writing the list – and gets to be all-encompassing of the time, so much that list-making becomes the sole activity.

30. I dumped this out, non-stop, in a half-hour. Feels good. Now I have to eat something – and go finish taxes. I can work for maybe another hour before Second Nap. First nap was almost two hours because I went to sleep at 5am. I am coasting, feeling almost human, but it won’t last – another one of the rules: feeling good, functional, almost normal, DOES NOT LAST.

Changes since 2013:

Very few.

I don’t do organized yoga since I’m no longer vertically stable enough to stand, and half the yoga I was doing was done standing.

I am no longer in charge of taxes – I did them until hubby retired; then he took them over. Probably a good idea.

And it’s now TWENTY-NINE PLUS years.

I’m still trying. Daily.

Book 2 – NETHERWORLD – is coming along. Very slowly.


There’s an incorrect word up there somewhere, but I’m too tired to find it again. Lemme know if you do, and I’ll fix it.

 

Symbols, the grace of rest, and pushing limits

White ceramic bunny with a bow and some easter eggs. Text: Oldies but goodies, Alicia Butcher Ehrhardt

TIS THE SEASON FOR SYMBOLS

This post is from April, 2013.

We’re in Lent, the pre-Easter season, again.

The post took me back sharply to Princeton, and the Princeton U. chapel, and being able, with a great effort, to sing in Latin for Holy Week.

A few things changed: back then I could still stand for part of the services, and some of the singing. By the time I left last year, I could not find the energy to participate in all the holy week services, I was allowed to park ON campus at the end of the handicapped ramp at the back of the chapel, and I had published Pride’s Children: PURGATORY.

Then I knew there was a possibility we would be moving, and every last chance to sing there (terrific acoustics, great tiny Catholic choir, gorgeous chapel) was precious – though we didn’t actually move until 2018 (at the end of the summer, right before classes and singing started up again after the break).

It is bittersweet – I miss it, it doesn’t miss me.

I am no better now, and six more years of my life have not been saved by medical research figuring out what’s wrong with us people with ME/CFS and fixing it.

But I’m glad I posted this back then, and I read it again and was transported instantly to the proud vaulted cathedral of stone. And the music.

Can you remember grace, and the symbol thereof, in a time in your life?

Remembering an old and dear friend

Light bulbs in a line, with the one at the right end lifted, ready to be dropped. Test: Oldies but goodies, Alicia Butcher Ehrhardt

WE HONOR THOSE WE REMEMBER

As I was going through old posts you may not have seen, I came across something with current applications, as well as remembering that day in Princeton when we put our friend (mine from our CFS support group and the Princeton Folk Music Society) Dr. Paul Whiter’s ashes into the memorial garden at the Episcopal church:

I was reminded of the fourth vow some Christian monks take in addition to their other vows of poverty, chastity, and obedience, the vow of stability, of staying in one place for the remainder of their lives. Thomas Merton wrote that it meant giving up the hope of finding somewhere else more perfect, and settling in, for life, to the ordinariness of the chosen place.

As fascinating, intelligent man, he would have enjoyed the community we have joined.

He touched many lives, with a gentle spirit.

From April, 2013, when we had just lost him: Words are my memories.

Photo of Dr. Paul Whiter

Where do liebjabberings visitors come from?

Visitors Feb. 18, 2019, to my blog liebjabberings came from US, Canada, India, South Africa. Australia, Malaysia, France, UK, and the Philippines (graphic shows country flags from my stats page) New countries to blog 2:19:19

Mar 3 new countries

SOME DAY THIS WILL MAKE A DIFFERENCE

And meanwhile, visitors are welcome from anywhere!

Stop and say hello – comments welcome. I’m going to steal the following from a fellow blogger: I like to have the last word, so you’ll always get an answer. If you don’t, know that I still read your comment – and decided to let you have the last word on the subject (at the end of an exchange, usually).

Things are getting a little less crazy around here.

We went to visit our kids in Boulder, Colorado, and had a lovely long weekend.

Then we came home, and I had an old friend visit for two evenings – she arranged her life to be able to visit, and it was so good to see her again. We go back 50 years+!

And then came the visit to the new, nice dentist – except that he had an emergency, and the total time dedicated to an appointment which was literally across the road came to over four hours – and I get wiped out by long out-of-the-house events.

I don’t care – all these were desirable (I love dentists who don’t find anything needing doing, even when a bit of a porcelain crown cover came off) – and much appreciated visits with loved ones.

I’m getting to the new stuff.

One of the residents here, of the several who have read Pride’s Children: PURGATORY, chatted with me this afternoon about her reactions to it – and has offered to connect me to her book club. Book clubs are wonderful ways to get word of mouth out to serious readers, and I look forward to maybe even visiting some of the many in our new city.

I get so few opportunities to just talk and answer questions about my writing (one tries not to be a pushy author) that it was a real pleasure, as well as good for the soul. She got so many things about the work.

One of my main questions – because it’s a trilogy – is always whether readers were unsatisfied at the end of what is known to be the first volume, and feel cheated in any way. She said no – but she can’t wait for the next one – which is balm to my senses.

She also said she had trouble putting it down, and for someone whose nightly habit is to read a bit with her doggie settled in her lap, and then go to bed, I find it cheering to be unputdownable.

I ordered and received a proof copy from Amazon. Createspace has closed, and the automatic transfer to being printed on demand by KDP (?) has to be checked out. The cover looks fine (except that it says ‘proof’ on it, right through the middle of Kary’s head), but I need to compare the paging, and look for the few errors that have been corrected, and make sure they are using the latest file. Due diligence. Then I’ll see about ordering some replacement copies to have as my pre-move supply has all been given out at our new community.

And the usual small problems.

My .mobi electronic ARC has NOT worked for the last two people I sent it to, which means Kindle changed something, and I need to re-create the file to send out for reviewers. There are few things worse than getting someone to read and review for you, and to send them a file they can’t open!

It is irritating to have to spend energy on something that was working fine. And it means going a long way back, and worrying about the version of Scrivener (I have v3, and haven’t updated to it yet), and figuring out a bunch of things such as Compile for ebooks…

I just found my writing books – I used to have them at my right hand while writing, but haven’t since everything was packed and shipped: what have I missed and will it show in the new scenes?

I still haven’t recovered from last July’s crash.

I can’t remember where I was on so many little details of life. And writing.

But this is the last move

before I finish the trilogy – if I have anything to say about it. And the good Lord gives me life and brain.

Things can only get better – I’m excited at the possibilities, and cheered by finding readers here.

I will get my software, computer, and backups under control. I’ll keep writing, and make the progress I had hoped for from the new digs.

And go swimming.

It was always about the pools.


Does your future have pools?