Monthly Archives: May 2016

To get where you write, know where you start

then write

SATURDAY MORNING REDEDICATION AFTER A WEEK OR TWO OFF FROM WRITING

Every morning I wait for the wits to gather, for the two usable neurons to click on and do their job, for the moment when (IF) the minimum amount of brainpower is available to make the decision: block the internet so I can write.

I am fortunate: I have time for writing. I actually spend each day at the computer, where, if I can write, I write. Many other people have to snatch their writing time from a busy life with a day job and children and the dog and… I don’t. I could write all day every day – if I could get the brain to cooperate.

It’s frustrating. I always wanted to write when I retired, back in the days where computational physics took my daily energy – and I gave it gladly; programming with the purpose of filling the space between experimentalists and theoreticians is the best use of the kind of brain I had back then. Connecting the measured reality with the equations which explained them (if the equations were right, which is what I was ascertaining) is a joy reserved to few, and calculating theoretical parameters from experimental data was a trip. I could do it; I did it; it was useful and appreciated, and the way I had planned to spend my life.

So now that I am retirement age, and all finished with even the possibility of going back to do useful physics, and have the time, I have to wait to get the neurons clicked on (both of them), and see if I can make them think for a little while. Frustrating.

You see, they don’t want to turn on. What a joy it might have been to write with a right mind. For that matter, what a joy it would have been lo these many years to do almost anything with a right mind, I will never know.

But life is what happens when you’re making other plans, and this is mine, and I write with it, and I know that if it doesn’t come on today, this brain of mine (or, much of the time, that it is not urgently required to do something that only I can do), it will come on tomorrow, and I will get a few more words out.

Why? Why do all that work when I could sit around and eat bonbons (we can afford it)?

Because the story of Pride’s Children, of Kary and Andrew and Bianca, was VOUCHSAFED to me, as a whole, and it’s not finished writing yet. It’s such a lovely word, ‘vouchsafed.’ It means, roughly, granted to ME, because I am the best person for it. It came as a whole, this story ‘of obsession, betrayal, and love,’ and I know where it ends, even as I discover some of the side paths it takes to get there, NECESSARY side paths.

I won’t stop writing, finishing the remaining two books in the trilogy, until I am finished – or I am stopped.

So all the ‘life events’ and distractions and bonbons have to wait, because I have work to do, it is important, and it isn’t finished.

And because, by starting, I have promised my readers.

And because I can. Eventually. Most days.

And that will have to do.

A day of protest for the #MILLIONSMISSING from ME/CFS: May 25th, 2016

(not my shoes*)

(these are from Wikipedia)

I AM ONE OF THE #MILLIONSMISSING

I am being represented in Washington by a pair of my shoes.

Black high heels I used to wear to work, and when giving physics presentations such as the one I gave in the week of November 5, 1989, at the American Physical Society Annual Meeting of the Division of Plasma Physics in Anaheim, California.

I came back from that meeting with a raging fever; my doctor had antibiotics waiting for me, but I never got well again.

I was diagnosed with Chronic Fatigue Syndrome by an infectious diseases specialist. I was lucky; in those days getting a diagnosis was hit or miss, and the stories of people misdiagnosed for years were rampant even then.

Lucky – in the sense of knowing what was wrong. But the specialist and I looked at each other; he knew he was conferring a walking death sentence. I knew, even back then, that nothing would ever be the same.

It hasn’t been.

Research money allotted by Congress was diverted, many if not most doctors still don’t believe it’s real, and they still tell you it’s all in your head, to buck up and get some exercise, and stop goldbricking. The ones that acknowledge its existence have nothing to offer as a cure; treatments are palliative; and nothing lets you go back to what you were.

May they rot in whatever level of hell is appropriate.

It really shouldn’t be my job to figure out my illness, should it?

Back to Washington – and Seattle, and Melbourne, and…

Someone with far more energy than me – or their friends and families – has organized a Stand In. With the rubric #MILLIONSMISSING, they asked us to send a pair of our shoes, and a single choice of what we are missing the most in our lives.

I wrote: ‘I miss research physics.’

Someone from #MEAction will take these pairs of shoes (*I don’t have a picture of mine – that would have been too organized, and I had to work very hard to get my pair mailed as it was), and make a display so that the media and legislators have some idea.

There are millions of us worldwide – and somehow we have been left to cope with a huge public health disaster which robs society of the work we would have done – by ourselves.

At least, that’s how it’s felt to me. There are no specialists in New Jersey. There are a few in the nation, and many quacks, and many non-specialists doing the best they can dealing with symptoms. Some elaborate protocols that supposedly help – but require many months of elaborate regimens of supplements that I can’t even think of following; those are often used, at their own expense, by people so sick they have to do something.

But with no diagnostic criterion and approved treatment, insurance companies are reluctant to pay what should be their part – and very sick patients have to wrestle with getting both care and payment.

Not that there is a standard of care.

It’s getting more common to know someone with CFS

Or ME as some call it, or CFIDS, or the laughable SEID, or Yuppie flu, or chronic mono, or… The ‘experts’ spend much time arguing about these details.

Me, I think it’s going to turn out to be a post-viral thingy: you get something, it wreaks destruction, the virus may or may not stay around, but your cells no longer manufacture energy from your food.

I imagine a whole bunch of other complicated syndromes with some of the same symptoms, from Gulf War Syndrome to chronic Lyme, may benefit when researchers finally figure out how this works.

Meanwhile, those of us who have these things wish we’d had Ebola. Or HIV. Or TB. Or leprosy. Or anything that used to be a death sentence and is now managed, in many cases, by modern medicine.

Have a happy day – and give us a passing thought. And a prayer.

And understand we are not lazy, and are certainly not getting anything out of this.

And all we want is our lives back, so that we can go back to contributing to society the way we were doing when hit by the random freakish act of Nature.

There are an awful lot of us. Millions. And we are missing. From our lives – and from yours.


What can you do? Be aware. There are foundations of patients supporting research, and activists, and support groups if you want to contribute with your volunteer activity or financially. I belong to the New Jersey CFS Association. I can’t tell you which is most effective, but MEAction organized this event.


Just for today, I will remind you that Kary Ashe, the heroine of Pride’s Children, has CFS – and copes as well as she can, while trying to contribute SOMETHING to the world. Symptoms vary all over the map in severity; she is one of the possibilities, in many ways typical.

Structure is necessary and integral to fiction

without structureDO YOU WANT A TALE – OR A STORY?

I’m not only an extreme plotter, but I’m a structuralist.

I’m working on the first scene of Book 2. And making very, very sure that it works structurally, with the book, with the beginning, with the plot, and especially with the ending.

The brain craves storytelling, but it craves more than content, it craves analysis.

And analysis is structural. Stories have a beginning, middle, and end. My mother used to drive me crazy when she’d tell me about someone, and then, when I’d ask, ‘what happened?’ she would say, ‘I don’t know.’ or ‘that’s all I heard.’

She had illustrated a point, given me information, but wouldn’t give me a resolution I could hang onto.

She was telling me tales, and for those, the fact that it happened is enough.

Story is much more than that.

How is structure important?

Here’s an example from non-fiction:

Imagine I’m talking about the root causes of poverty, illiteracy, whatever, and you’ve come to hear me because I’m supposed to be an expert.

But I tell you about four contributing factors, and I do a short one, a VERY long one, and then another two short factors, briefly, because I’m running out of time.

What are you left with?

NOTHING you didn’t already know.

And it drives you crazy because I told a tale, took your time – and didn’t make a point.

Now, imagine I started with the smallest point, continued to the next shortest, then the next, and finished by spending my time telling you about one of the causes. Wouldn’t you expect that to be the most important cause I have to talk about? And wouldn’t you expect me to say something significant and important about it?

By giving it space and time, I have made it important – and the rest of my presentation had better support that.

Or I could start with the important point, spend time on it, and then tell you in quick succession other possibilities, followed by a quick conclusion. Wouldn’t you end up wondering WTF? Did I run out of time – or why did I not eliminate the easy ones first?

How does this work in fiction?

Storytelling is presenting information in such a way as to emphasize WHY you’re telling the story.

I expect you to reach a conclusion, tell it to me, support it, and teach me something I would otherwise have to figure out on my own.

Structure is intentional. If you need to tell a story in chronological order (a common requirement), you still have to choose which parts to tell, and how to make them fit a structure that will let the reader absorb it. Or you are getting in your own way, and are telling an anecdote.

So it is very important that I consider the structure I’m going to foist on the reader, from the very first scene. Or the reader will notice. And not like it.

That’s not what I promised.

Are you happy when you notice a story has no real structure?


Thanks to Stencil for the ability to make graphics for these posts – I use the free account, but they have far more capabilities if you get the paid one.


Remember, if you like a blogger’s prose, consider that the blogger’s fiction is written by the same person. Try it – you might like it.

I’m trying to get myself to put up some short stories; it’s on the To Do list.

Pride’s Children. On Amazon.

Non-24: When someone you love is an okapi

Hoofbeats‘WHEN YOU HEAR HOOFBEATS, THINK HORSES, NOT ZEBRAS’ IS A STANDARD INSTRUCTION GIVEN TO DOCTORS.

In other words, the problem is more likely to be caused by something common and well-known, than by some esoteric illness or virus or unknown bacterium.

More likely, yes.

But what happens to the person who isn’t even a zebra’s worth of common? To the person with the weird (ie, not yet well understood) illness?

Why am I asking this question? Because I just got a request for feedback from a ‘second opinion’ company, about which more in a bit.

I didn’t think three things could strike the same family: me, a father who is an extreme geek with experimental data, and an okapi*.

Never heard of an okapi? An okapi is an African ungulate that looks a bit like a gazelle someone has exchanged the legs of with a zebra. Yup. The legs are striped, the body plain brown.

It is real.

Once you see one, you will remember. Here is one from Wikipedia Commons for your convenience:

Okapi2.jpg

Horse treatment is standard – What, it doesn’t work for you?

And when your little okapi keeps getting standard medical treatment as a HORSE, and you finally figure out what the matter is, and ‘they’ (the medical establishment) could have figured it out a LOT sooner if they had even considered your input as a parent, well, the fury is rather large. Especially when this has been going on at LEAST EIGHT years and has ruined your little okapi’s life.

It is ironic, literally, that the mother in this family (me) has an invisible illness that is characterized as ‘of unknown origin, caused by attention-seeking, probably psychosomatic’ by most of said medical establishment. If you have one of these, you know how you are treated by doctors. Because this mother does, she has learned to be very determined and to question EVERYTHING.

But when you go to see doctors, TELL THEM what is going on with the okapi-child, and they basically ignore you because they can’t find something their little horse-tests tells them is treatable by normal horse-treatment methods, and they blame your little okapi for not following useless horse-recommendations better, then you start to get VERY frustrated.

Horse treatment makes okapis worse, but it must be the okapi’s fault

Worse, they give your poor little okapi things that don’t work, and then say that’s all they have. And refuse to dig deeper!

And the medical establishment is happier with a multiple-disease ‘diagnosis’ of which two parts are psychiatric and the third is ‘mild’ – and not responding to their ‘treatment’ because the patient isn’t following it – that you start to feel as if you, the mother of the okapi, must also be insane.

Small rant against the medical profession

You trust ‘medical professionals’ to deal with the medical side, the physical and mental side of living in a body.

They cultivate this to the point of absurdity by their authoritative demeanor and white coats and beeping machines.

And then they let you down, over and over and over – which is normal because these body/mind things are complicated, and insurance companies – but they make it worse by telling you, the victim here, that it’s your fault.

Bad enough the SLEEP DOCTORS – over all these years – couldn’t figure it out; after all, they’re HORSE-doctors. But you’d think they’d know there were other animals in existence, and that they might run across one every great while. They should be LOOKING.

The insurance company pays for a SECOND OPINION

The ‘second opinion’ people took a very careful history – and  ignored everything we told them. (These are the people you’re supposed to be able to rely on when the ‘first opinion horse-doctors’ don’t seem to be solving anything and are recommending things you are not so sure about.)

And didn’t even say, “if you think that’s what it is, here is what it will take to confirm or deny that.” And gave as a suggestion something that had already been tried for a LONGER period , and then ignored by the originating doctor AND the supposed specialist.

So we parents got involved. I took the information we’d been telling the latest batch of doctors, sleep and otherwise, and asked myself what it meant. I discovered a rare sleep disorder called Non-24 Hour Sleep/Wake Disorder. And it fit.

Non-24 Hour Sleep/Wake Disorder – inability to sync to the 24-hour day

Non-24 is a disease of the inability to sync circadian clocks with the normal day. Normal people have a 24+ hour day, which is synced, via light through the eyes to the pineal gland, to the actual day, adjusting as necessary for the seasonal changes in the amount of daylight. About half of all totally blind people can’t do this – they have Non-24.

And an unknown number of sighted people have Non-24.

Reported day-lengths range from a bit over 24 to several hours more. Our little okapi has a visible rotation, which turned out to be 27 hours. Once you get started on such a rotation, many things conspire to make it a bit longer, few to shorten it, and almost none to shorten it spontaneously to ‘normal.’

If you look up the medical websites and the literature, the disorder is considered rare in sighted people. After going through what we’ve gone through, my guess is that, since erratic sleep behavior, late nights, staying up all night, sleeping late, etc., are common behaviors among teens and young adults (especially college students), Non-24 may instead be highly underdiagnosed.

“I can’t help you if you don’t follow the protocol.”

How to find out if you’re lazy and characterless – or suffering from a sleep disorder:

We had to go to the extreme effort of getting 10 weeks worth of data ourselves, and having a professional statistician analyze it, and then find our own specialist (which the insurance company refused to pay for in-network, saying they have competent doctors there – colleagues of the horse-treatment one in the SAME building).

The specialist took one look at the graphs produced by the okapi’s father and said, “Yup. That’s it. You got it.”

No, the mother is not crazy. She is being ignored and discounted and treated like an idiot.

No, the child is NOT a horse. It isn’t even a zebra. It is an okapi.

And damned lucky to have the crazy determined woman for a mother and the extreme geek statistician for a father.

And incredibly lucky to find a researcher who studies okapis. And just might know how to treat them.

The moral of this story:

  • Listen to the crazy woman
  • Or: at least consider the possibility of okapis because you actually listened.
  • Or: a determined mother is worth something.
  • Or: be persistent – and be prepared for it to take a LONG time when you’re up against the medical/insurance establishment.

The sad part:

The treatment may take some time, but is not even expensive. It could have been tried a year ago, years ago. The standard horse-treatment actually makes the problem worse – because of the timing – though it MAY accidentally work if several weeks of it are followed (long enough to hit the right spot by accident – could be four weeks of misery). Maybe – as it might not be recognized???

I guess we should be happy this didn’t happen, because there is no understanding attached to accidental cures or treatments if the next time the problem recurs, it doesn’t work again by accident because, for example, it it not done for the right number of weeks again.

Even sadder: we picked the original sleep doctor (this time) because we were told she knew N24SWD. She didn’t, really. But we were getting surer and surer; she didn’t listen. She pooh-poohed the idea, said the data didn’t confirm it, said the insurance company wouldn’t approve a longer trial of actigraphy, said it wouldn’t show the patterns if the okapi was trying to pretend it was a horse so as not to be completely isolated; this isn’t true: the 10 weeks data we provided, and the scientific papers we were shown, took this into account, and talked about people trying to live with N24SWD and a social 24-hour day.

We are incredibly lucky, too, that a researcher was located in Philadelphia, a reasonable driving distance for us in NJ. We are incredibly lucky that he picks up his own phone! – listened to me! – accepted the data we sent him – and had a spot for us within a week. And that he has two sighted patients, and knows of more, and knows the researchers working on the larger problem of N24SWD in blind patients, who have the scientific integrity not to just study the patients who might be helped by the drug companies supporting the research (blind patients) but sighted ones as well.

And that feedback I mentioned at the beginning?

We had submitted ALL of the available data (they went back 8 years, to the first sleep doctor when she was a teen who was tired all the time, and the first sleep studies; plus took an extensive intake interview – almost an hour on the phone – during which we emphasized over and over that she was rotating), submitted it to a ‘specialist’ at a major university, and he didn’t even say, ‘This needs further looking into,’ except to recommend another week’s data-gathering with an actigraph. The company wants feedback. I restrained myself. Their ‘analysis’ was useless – and set us back three months while they took forever to gather the ‘data’ and run through a couple of ‘specialists.’

I’m still trying to figure out how to give them ‘feedback’ when they obviously don’t listen.

* How do you find out if you have Non-24?

The gold standard is to wear an actigraph for long enough to show the rotating pattern. A sleep log will show the pattern if kept accurately.

But the easiest first step is to notice the rotation: always going to bed later (if allowed to), culminating with entire nights spent up; long daytime sleep (if allowed); inability to wake up; chronic daytime exhaustion; missing important things in life such as exams by sleeping through them; and the inability to just ‘go to bed.’

NOTE: Actigraphy is done with a special wrist monitor – expensive, and borrowed through the sleep doctor (covered by insurance if it covers sleep studies). Unless conditions are perfect, the two-week period doesn’t show enough of the pattern. Instead, we bought and used a Jawbone UP3 because my husband was able to download the actual data, and massage it into the same kind of graphs produced by the commercial device. It was non-trivial; he is the expert statistician. Okapi uses it routinely now – the Non-24 specialist appreciates the data.


If you like my prose, consider reading my stories – they are written by the same person. Free short stories here, debut novel on Amazon. I’m working on more.

Thanks to Quozio.com for the quote software used to make the first image.

ME/CFS: Writer’s personal and professional inextricably entangled

missing.millionsTODAY IS MAY 12TH, INTERNATIONAL ME/CFS AWARENESS DAY

I had hoped, by this year, to have made more of a splash with a novel which has a main character who deals with CFS – and some of the complications, from exhaustion, to limited exercise capability (and especially very limited ability to INCREASE exercise over time), to pain, to brain fog.

It is difficult to write a character who is sick without triggering the pity response in readers – and then immediately checking out with “Who wants to read about that?”

It is difficult to write a character without making her seem inspirational for dealing with a major illness – this is called Inspiration Porn by disabled people who rightly don’t appreciate being called inspirational because they can get out of bed in the morning and try to make the best life they can of what Life has handed them.

And yet saying that giving a character CFS (or the old standby from the Romantic days, tuberculosis – otherwise known as consumption) is the same as giving them green eyes, just another character feature, is completely wrong. Though green eyes may dictate a character’s choice of lipstick or jewelry or clothing color, a major CHRONIC disease is a huge commitment for a writer, since it affects everything in the story. EVERYTHING. From the subject choice to the characters to how the writer (me) has to set up scenes and plot.

I write between the Scylla of ‘ick’ and the Charybdis of ‘does she still have that?’ Going too far in either direction immediately loses a portion of the audience, prospective or actual.

Today is International ME/CFS Awareness Day

And this post is about that, and it’s about me, and it’s about the story I chose to write, TOO.

I can’t help that. I have always said that I write from the fullness or paucity of who I am.

I don’t know how other writers do otherwise; I’m sure they find ways to tuck part of themselves and their life’s experience even into Sauron.

What it’s like, for me

I try to ignore it as much as possible, and yet a lot of my time is spent making sure I don’t do any of the things I know will bring that day’s writing to a complete non-starter. Such as eating too many carbs, not getting enough sleep, ignoring the start time for the next nap.

I spend a lot of time staring at the wall, able to surf the web gently, but not even capable of writing a blog post (and you can tell from the results how little thought goes into some of them!).

You don’t even want to hear the scads of coping methods – what’s the point?

My one determination is to let CFS destroy as little of my remaining life as possible; I’m partially successful at that. The rest of the time I’m fooling myself.

And I am depending on the kindness of family – who ignore my inability to be a normal participant in family life, to pull my weight, to not need things more than my ‘fair share.’

Even with an absolute minimum of what we can reasonably hold me responsible for, I get further behind every day. And any day that has ‘special stuff,’ such as today (which ALSO has me having to deal with insurance by phone – or risk not having pain relief because the company switched to a generic WHICH DOESN’T WORK) takes what little good time I have and pours it out like water on hot sand.

I don’t say this for any other reason than to stand witness on this day.

May 12, 2016.

Another year gone by with no real progress.

My 27th.

Verisimilitude – the appearance of Life

Considering what many of us PWCs (People with CFS) go through, the fact that I can sometimes write, and have actually worked my way through publishing a novel, is just short of miraculous – and I’m rather proud of the results.

In case you were wondering, things WERE better when I was Kary’s age; the mobility problems which bedevil my life came later, and might have been avoided (I won’t go into surgeons and knives – what’s the point? Hehe) had I known a LOT more, and had I not been the beneficiary of ‘old lady medicine’ (the kind of treatment which assumes that after a certain age, you aren’t worth saving).

Kary is NOT me, except in the small details and the normal amount of characterization that writers use: details such as outlook on life, a background we either have or research, a house in a place I’ve visited, a life in a place I know well enough to portray realistically for the purposes of the story.

Kary’s story is not mine: other than sharing a disease and some vacation landscaping and a proximity to Princeton, my life is routine – I have been happily married for 41 years now (Happy Anniversary again, dear husband), have never lost what she loses, have not had the experience of having big publishing pick up a historical novel that happens to go best-seller, have a different professional and personal background, don’t have the capacity to get through Anatomy…

Maybe we share having been affected by a particular set of books – but we grew up in different countries, so there can’t be that much overlap.

Wandering minds and brain fog

I’ll stop here, and list a few links to places doing a far better job of staying focused on real-life ME/CFS.

Me, I keep shying away from letting it have any more of me than I absolutely have to cede.

Links for ME/CFS International Awareness Day and CFS in general

  1. ME/CFS Action is doing a protest in Washington on May 25th (the day they could get a permit?). I have sent a pair of shoes which will represent me – if it isn’t obvious by now that there’s no way I could go there, park, walk, protest, …, you haven’t been reading this post or the blog.
  2. Some background on Jennie Spotila’s blog about the highly controversial PACE trials in Britain which in 2011 claimed to prove that all we need is behavior therapy to stop seeing ourselves as sick, and exercise therapy to get better. The British health system would love nothing better than to state there is already a ‘proven’ therapy which costs them very little, and that patients with ME/CFS are lazy – and sweep the whole thing under the proverbial carpet. BTW, when you want one-payer health systems, one of the things you get is a single-therapy for everything approach – and entrenched cost-cutting measures because of rationing.’ Look well, oh wolves,’ before you sign on. Budgets are ALWAYS getting cut.
  3. If you want to find out how many ‘solutions’ have been proposed, spend some time at Cort Johnson’s Health Rising blog – and you will be immediately depressed at the enormous number of unproven methods and supplements and ideas that have been put forth over the years, none of which have fixed much.
  4. Last one for today is also Jennie Spotila’s: she keeps track of one of the indicators of how our National Institutes for Health spend research money. When researchers, and administrators at government agencies, don’t believe something is real, they have no guilt about diverting money to their pet projects (some diseases have WONDERFUL PR – PR agencies and lobbyists riding the gravy train completely out of proportion to the number of people affected and the severity of the illness). And every week she points to one of the indicators of research money AGAIN being zero for a major disease.

I don’t mean to disparage all the researchers who ARE doing good things – without them we wouldn’t have ANY awareness to celebrate/memorialize/trumpet today. Some of them have been downright heroic.

I do mean to warn about the abundant quackery that rises up when the diagnosis isn’t known and there is no treatment that works for a ‘condition.’ People need hope, even when it dumps them with nothing, and money, time, and effort spent.

Depress you enough yet?

Not my intent. ‘Awareness’ is all we’re going for here today – readers here are no more responsible for fixing things than I am; if anything I am more (except that I can’t – but for the fiction).

I believe mightily in the power of fiction to change hearts and minds.

And a final plea: if you haven’t, consider reading Pride’s Children. And giving it to people or recommending if you like it. And writing a review.


MY GRATITUDE TO STENCIL for the ability to make images with quotes. If you use a lot, try them out.