A white rose for my memories

MEMORY TRIGGERS?

Things stay with you.

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

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

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

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

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

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

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

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Fiction: the SECOND-BEST path to empathy

DIRECT EXPERIENCE – BEST PATH TO EMPATHY?

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

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

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

Because direct experience doesn’t include another person.

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

Fiction is a largely underused way to deliberately develop empathy

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

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

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

I’m reproducing the whole post here:

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

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

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

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

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

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

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

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

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

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

Reading is just you and the book.

Oh, and the author.

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

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

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

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

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

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

The author’s power is very real.

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

Sounds horribly preachy, doesn’t it?

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

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

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

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

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

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Why repost my own post?

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

 

Excited that PC is a WSA 2016 Finalist

In case you’re not signed up to follow Pride’s Children.com, or haven’t heard me mentioning this on FB, here’s the link:

Pride’s Children: PURGATORY Finalist in 2016 UK Wishing Shelf Award

Real Fiction: How to develop empathy

EXPERIENCE MANY LIVES VICARIOUSLY – BY READING

Let’s start somewhere

NOTE: None of what I’m about to say is meant to ask for help or pity, and certainly not for special privileges. Just understanding. JUST. And, among those whose lives isn’t constrained, both happiness for what they have, and a little of that empathy for those who don’t have it.

Even though political events have made this development more urgent, I’m not going there: better writers than I are doing that right now.

I’m discussing the part of empathy associated with illness, chronic illness

When friends seem surprised that I’m still sick, I want to respond as a character in my novel, Pride’s Children: PURGATORY does:

“Has the word ‘chronic’ been marked in dictionaries as ‘Archaic’?”

They don’t ask this question of people who have ‘real’ illnesses such as Lupus or MS or Rheumatoid Arthritis, do they? If someone now lives with HIV, friends usually understand that there is no cure, and remission is bought by a DAILY regimen of pills under a doctor’s care.

They understand that many mental illnesses are chronic, and also managed with a drug regime – every TV viewer has seen the TV writer’s trope: a violent person who is turns out is to be pitied because he has a mental illness, and is ‘off his meds.’

Invisible illness – can’t see it, must be fake

But if you have one of the invisible illnesses, ME/CFS or FM or Gulf War Syndrome, that are not understood because they have been disbelieved by medical ‘professionals’ in general, you are expected to have made a miraculous and convenient recovery using supplements, alternative medicine, acupuncture, specialists, exercise, diet, or yoga, and are now back to full health because, the groups’ sick in-joke, “You don’t look sick.”

‘Chronic’ thus means ‘inconvenient’ to those inquiring, “Are you still sick?”

It doesn’t mean, ‘needs continuing care for symptoms that wax and wane and never go away.’ It doesn’t mean, to the friends, ‘let’s not forget her because she doesn’t have the energy to make new friends.’

And it doesn’t mean, ‘Advocate for her, because she doesn’t have the energy to do it for herself.’

Then something happens to THEM

And it is too late; they get a crash course in empathy – or not.

Until the ill one is their child, their spouse, or their parent or grandparent, and they have to provide or arrange for whatever care is necessary, ‘chronic’ is just plain inconvenient, unless it is also ‘malingering,’ ‘gold-bricking,’ ‘laziness (she’d get better if she just got out and exercised),’ or ‘playing the system so she doesn’t have to work.’

And then, unfortunately, once they understand, they are too busy to be useful – because they are taking care of said loved one, and the now know how much energy it takes to do that, and have little left for the advocacy that is so desperately needed. Catch-22.

Which brings me to the point of this essay:

There have to be other ways of developing empathy than suffering chronic illnesses in your own flesh.

One of the best – and highly underutilized – is fiction.

But not the special books for children – barely disguised non-fiction

‘Little Tommy has Cancer’ or ‘What Does Ostomy Mean’ or ‘You have diabetes – now what?’ – designed, usually, to help the child, school, teacher, or close friend understand what is going on with the child.

Not usually meant for the world in general, such a book might have a cover picture of a kid in a wheelchair, or with an oxygen supply device, or getting a shot. These books are necessary for the ‘different’ ones, the same as the Barbie with crutches is meant for the different child to see herself (as both handicapped AND held to impossible fashion standards).

They are less frequently bought for the kids who don’t have the disability, disease, or impairment – but are there in the library if necessary. These aren’t the fiction I mean, because they’re barely fiction.

Nor books (or movies) intended to promote suicide as noble

Those are just disgusting: if someone becomes broken their best option is to find a way to tidy themselves out of this world so as not to inconvenience their ‘loved ones.’

Ask any real family affected by suicide whether they feel loved by it.

Million Dollar Baby, The Ocean Within, Me Before You – it has become a trope.

I reserve judgment in the case of ‘intractable pain or depression’ – and I could not possibly judge the person who chooses this exit if it is truly intractable – though I often hope it means they have been unsuccessful at finding help. It is not a matter for fiction, because fiction always conveniently leaves out the real details. Horribly depressed and wracked by pain people can and do have ‘quality of life’ in many cases – when their need to stay alive for those same loved ones is their prime imperative. YMMV.

Alternate preventive empathy development made easy via REAL FICTION

In Real Fiction (TM) of the empathy-developing variety, characters happen to also have a disability, illness, or difference – but it isn’t the focus of the story, while always being there.

Real fiction offers the reader a way to understand without being personally overwhelmed.

The writer can go into the thoughts of the character to show inner strength balancing outer pain.

The reader is thus safe to explore the consequences and conditions set up by the writer, to understand more, to literally be a voyeur – or in modern parlance to inhabit a virtual reality – that allows the reader to experience the life of a disabled person from the inside.

This alternate reality is temporary, and can be left or abandoned if it becomes too much for the reader to bear.

Fiction allows the small details that are important to the character to emerge, rather than be lectured about.

A great example is the book (and movie) Ordinary People, by Judith Guest. A family tries to understand why their son attempted suicide – and the family dynamics digs down into the real cause.

Pride’s Children is designed to be REAL FICTION

One of the main characters is a former physician who has CFS (ME/CFS), and is no longer able to practice medicine (which requires energy and brainpower), but has retrained herself as a novelist.

The story shows the development of her change in the area of personal worthiness for her goals, triggered by an accidental meeting with a charismatic actor which then affects her whole life.

Is she correct in the assumptions she’s taken on as to her own value as a PWC (a person with CFS)? Will chronic illness limit the rest of her life? Can she hope for and desire what ‘normal’ people are allowed by society to want?

At least you don’t have to get sick to find out. You will just have to read.

And be patient. It’s taking the writer a while to finish the story.

What’s your favorite vicariously-lived life? Who would you have liked to really be?

If you had only one year, what would you write?

A THANKSGIVING REFLECTION

Today is turkey day for many people, including my huge and wonderful extended family in Mexico City, Detroit, and all over the western world. I am so grateful for them. I wish I were with them.

I am grateful for friends.

For self-publishing. Even for Amazon.

I realize how grateful I am for the ability to write, however slowly, but I’ve been feeling lately it is slipping away.

Part of that is the normal losses of life: the last chick has left the nest (we hope, for her sake and happiness, for good). I am in the middle of a huge effort to downsize. And another huge effort to walk properly again. Both these efforts take a lot of energy – and the energy has to come from somewhere.

A big part is chronic illness; it demands more than anyone can afford.

But part is also aging, and the thought that if I slow down much more, I will be at a standstill.

Time is finite – will you be happy what you do with yours?

So this morning I asked myself the title question: If you only had one more year to be a writer, what would you choose to be your legacy?

Many writers have had this question thrust on them. Some have quit writing – they’ve said what they want to say, and the work is getting onerous.

Others, like Sir Terry and Iris Murdoch, were taken from us by the disease no one seems to be able to fix except in mice – Alzheimer’s Disease. I hope AD also removed from them the pain of knowing they were losing it, because it is the most awful feeling.

But still others – and I hope to be in this group – use this question to focus, to re-prioritize and re-aim their writing, and to ask themselves if they really are doing everything they can – and whether the work is important enough to warrant the expenditure of so many chits.

I have a very short professional list:

I have to finish Pride’s Children: NETHERWORLD, and Book 3, tentatively subtitled LIMBO & PARADISE. Or maybe just PARADISE. And get them both published on Amazon.

I want to put the prequel short story, Too Late, up on Amazon.

I want them read, and I hope they will have an effect on people who consider the disabled ‘other,’ and not worth considering – or reading about.

I think I can accomplish those things IF I focus. Tempus fugit.

It is nice to consider that I have all the time in the world. But nobody ever really does. Life can strike the writer at any age.

Note that I’m also asking this question of people who don’t consider themselves writers – is there someone you should write to, or something you could write, need to write? That letter to your children? The one where you tell someone how much they’ve really meant to you?

What’s on your list?

Do you like your books pessimistic or optimistic?

WHAT DOES READING FOR PLEASURE MEAN TO YOU?

Why do we read?

To learn about the world and to learn about our potentialities as humans.

Really.

To read a book is to live part of another life.

To learn something new.

For relaxation.

For a vicarious adventure.

For pleasure.

Okay, so what KIND of books?

Optimist or pessimist? is a question I ask books.

Even horrible books can raise spirits, especially by the end of the book. The Diary of Anne Frank does that.

Is your book ultimately depressing or uplifting?

It’s a value judgment.

A depressing book – depressing author?

Doing some research, I spent time reading the Top Reviews for Karin Slaughter’s Pretty Girls (2016).

‘Top reviewers’ on Amazon are the ones who get the most comments or upvotes; the first four pages with that option selected had negative after negative reviews (it wasn’t until page 4 that I found two short positive reviews, from readers), many of those from reviewers you would love to get to read your book: Top 500, Top 1000, Vine Voice…

And those reviewers were appalled at the violence against women that was graphically depicted, over and over. ‘Gratuitous’ was used as a descriptor.

Many commented that the writing was good or adequate or competent (workmanlike would have been my assessment, from reading the Look Inside sample provided), but that the choice of subject matter left them sick to their stomach.

Ms. Slaughter is a NYT bestseller.

Apparently, previous books she wrote were not nearly as negative as this one; but many of these reviewers commented they would not read another of her books.

Some commented they wished they could scrub their minds of the images, for which they could find no socially redeeming reasons.

Me, I wondered why they continued reading, even if they skimmed.

The optimistic book – optimistic authors?

And I don’t mean just sappy and inspirational, with ready-made solutions to the world’s problems.

SF can be pessimistic (dystopias) or optimistic.

Romance is usually optimistic, and those fans who like to read Romance want their ‘happily ever after’ (HEA) ending, and can be very unhappy with writers who don’t provide one. There is a subset of books which end, not with an HEA, but with a ‘happy for now’ (HFN). These books are still hopeful, but possibly more realistic – and also possibly open to sequels.

Jane Eyre is optimistic. Silas Marner is optimistic.

Huckleberry Finn is optimistic. The Moon is a Harsh Mistress (Heinlein) is optimistic.

Thrillers and mysteries can be all over the map – but do deal with the grittier side of life, and more often are pessimistic or neutral, but possibly with an optimistic undertone, say, to a continuing detective’s life.

A special category is the detective who finds happiness

My favorite, obviously, is the definitely HEA ending of Dorothy L. Sayers’ Lord Peter Wimsey novels, ending with Busman’s Honeymoon, where Peter and Harriet marry, finally, and solve one last real mystery which sets the tone for their married life. Sayers wrote only two short stories about the pair and their children after that, even though her series was popular and is still popular now.

During all the novels, there was still an optimistic cast to the series: there was a right and wrong, people had principles, and there were consequences – but mysteries were solved and things set ‘right’ where possible. Sayers went on to write theology, so her stories were optimistic because she believed in the possibility.

You read what you like

And I don’t like ultimately pessimistic books.

Almost every genre can be written either way; even serial killer Dexter is optimistic.

I just want to know that, at the end of the book, things are, or have the potential of being, better.

That covers a lot of territory, but the thing in a book that makes me pick another book by an author is that there was hope at the end.

And you write the same way

The road to happiness for Harriet Vane and Peter Wimsey is a rocky one. But when he asks her, on their honeymoon, if she finds life, on the whole, good, she answers,

“Yes! I’ve always felt absolutely certain it was good–if only one could get it straightened out. I’ve hated almost everything that has happened to me, but I knew all the time it was just things that were wrong, not everything….Things have come straight. I always knew they would if one hung on long enough, waiting for a miracle…”

I haven’t the slightest reservation about Pride’s Children. It is an optimistic book.

Not easy. Not simple. Not fast. And you may have to trust me for a while.

It makes a difference to me.

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Are you an optimist or a pessimist? And does it show in what you read and/or write?

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

TODAY 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.

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

 

 

 

 

 

2016 and the writing of Pride’s Children

DEAR FOLLOWERS:

I beg your indulgence. I haven’t figured out which posts belong here (probably the general ones NOT about the books), and which on the Pride’s Children temporary blog. (new post over there, too, about the reviews slowly accumulating)

And the permanent site is still tangled in software I did not install myself, and which will have to be uninstalled and reinstalled.

There are a LOT of things on the to do list:

• Writing Books 2 and 3
• Fixing websites and blogs
• Marketing and advertising
• Audiobooks – should I decide to continue with my mad plan to produce the Read by Author version
• Getting reviews for Book 1
• Keeping up with Wattpad and WriteOn and…
• Life

Unfortunately, there is only one of me, and I seem to be on the critical path in every one of these items, gumming up the works and slowing things down.

So you will have somewhat irregular blog postings, and occasional rants.

I thought writing was hard – but I can’t wait to get back to it – because the marketing, etc., is HARDER.

I have a bent for the writing, interest but little experience in the other, and tech skills to be developed on websites and blogs.

I’ll get there – I’m still enjoying all the bits and pieces, and it has been wonderful getting some feedback from complete strangers – and other feedback from some of the people I’ve been following online for the past four years and am in awe of.

But it may be slower than I’d like, because I want to push to make the writing faster, now that I kind of know what I’m doing in many writing areas. I think I can. I KNOW it won’t be fifteen years again, and I’d like to aim to get Book 2 finished in 2016.

Big goal – but if you don’t write them down, they have a tendency not to happen at all.

Wish me well. And I wish YOU well with your goals for 2016.

2015 update on megadoses of vitamin B1, CFS, and writing

MEDICAL RESEARCH STILL HASN’T ‘SOLVED’ CHRONIC FATIGUE SYNDROME

Whatever they call it, CFS, ME, ME/CFS, CFIDS, SEID… they still have no answers I can believe. I can’t go to a doctor in my state (NJ), get tests which determine what I have and how severe it is, get a prescription for medicine which helps my symptoms (brain fog, pain, post-exertional collapse, swollen lymph glands, and perpetual exhaustion, among other things), and have a doctor titrate the right doses so I get better.

Or, heavens, get cured.

Grasping at the available straws

Vitamin B1 in megadoses (plus Celebrex, a cox-2 inhibitor used mostly by arthritis patients – which helps with pain) is the ONLY thing that has helped of the many things I’ve tried in 25, almost 26 years of having the disease half of all doctors (including my primary) still believe either doesn’t exist or is all in my head.

I’ve gotten used to that state of being – I can’t change it myself – and I refuse to let it take the rest of my life away from me.

For all the posts I’ve written about this over the last couple of years, type ‘B1’ into my search box. There you will find out where I got this idea, why it seems relatively safe, and how I’ve experimented with it.

How much is a megadose – and what do I actually take now?

I’ve been meaning to update the B1 information for a while, because the B1 posts (type B1 into the search box) are some of my most popular, but I was hoping to have a better report.

I tried a couple of things which I will discuss after reviewing my ‘protocol,’ but they didn’t work for me, so I have little new to report – except that I tried them and what they were.

I AM TRYING TO FINISH A BOOK – PRIDE’s CHILDREN, Book 1 is almost ready to publish – and moving slowly and relentlessly in that direction, but that’s why there haven’t been many blog posts.

And, curiously, I don’t seem to have much to blog about, except when, in the process of getting Pride’s Children, Book 1, ready to go up on Amazon, I run into a wall, and have to figure out how to get through it. AND haven’t seen anyone else solve that particular problem for me in a way I can use.

I seem not to think in blog-size chunks when buried in the minutiae of chasing plot holes and typos.

But I’ve wanted to do this update since I did the failed experiments.

Anyhoo…

Vitamin B1 Protocol I use (self-invented):

I set out five ‘doses’ of B1 every morning.

A dose consists of 500 mg. of Solgar Super Potency Vitamin B1 plus a 160 mg. capsule of Piping Rock Benfotiamine (fat-soluble B1).

Why the change in benfotiamine? Because my original pills, which came from Source Naturals, had a bad batch, and the pills (150 mg.) would crumble when I set out my five doses for the day, something which hadn’t happened before.

We went around with the company who sold them to me, and they replaced them with another set of bottles – from the same batch, and with the same problem – so that was that. I can’t be without it (I think – I haven’t tried), and I can’t in clear conscience take pills that crumble into dust.

EVEN though the capsules may have the exact same dust – they were MEANT to be capsules.

I have that as a reason – your mileage may vary. For the year and a half before that, the Source Naturals were fine – and they probably will be again. I may try them again, but right now I need at least the illusion of consistency – I’m trying to finish a book!

So how do I take my doses? Note change:

On the basis of learning that the B1 is supposed to be a co-enzyme for the metabolism of carbohydrate (of which I eat as little as possible), I take one ‘dose’ with each meal or snack.

That’s it – simple.

I often find, at the end of the day, that I’ve omitted one or two doses – the brain forgot. I don’t notice enough of a difference to know it there is one – but then the thing that does the noticing is the same brain that doesn’t work.

The REST of the Protocol:

I’m taking 3-5 naps a day. Again.(See below on what I tried to get around that.)

Some of those naps I spend doing breathing and gentle exercises, stretches, and isometrics. Other times I crash into a deep sleep. It depends on many things, including whether I got a good night’s sleep, and whether I’ve been fighting to put the nap off as long as possible. The brain fog doesn’t help.

My naps are 35 min. with a timer. Except that sometimes I go a lot longer. I let myself sleep if I need it – nighttime sleep is erratic, but doesn’t seem to depend on how many naps I take, or how long they are. So I just listen to my body if I can.

Failed experiment #1: STIMULANTS

Long story, but I was getting useful effects from taking half a Bronkaid tablet (ephedrine as a bronco-dilator, OTC). I would take only a nap or two, and even thought my peak brain efficiency didn’t seem appreciably higher, I seemed to be in my best state for longer every day.

That was good – and I loved it, and I used the extra good time to make writing progress a bit faster.

The bad part was that 1) my blood pressure started rising, and 2) the muscle pains got horrific – razor blades embedded in my flesh.

After some internet searching, I found that the first effect was not uncommon in older people like me.

And the other one ditto – except that some people suggested drinking more water, and I tried that – but ultimately it didn’t work.

Horrific pain was the killer – I stopped taking the Bronkaid that way (off label – do not use unless you are prepared to accept the consequences, or don’t get them). I could NOT get rid of the pain, and spent a lot of time doing stretches, yoga, etc., and was taking way to many extra pain pills.

But it DID work, and I miss its effect. It was nice to be a bit more coherent, take fewer naps, and get more done.

Failed experiment #1: MANGANESE

Portkelly, who commented on one of my early B1 posts, mentioned that he takes 10 mg. of manganese with the B1 – I think every time.

THIS IS WAY TOO MUCH FOR ME.

APPARENTLY, if your system doesn’t process the manganese (source: the internet), and if you are older this cn happen, it ACCUMULATES – and again raises your blood pressure.

This getting old is not for sissies – when I tried adding the manganese, just 10 mg. a day (not a dose), MY blood pressure started rising.

As soon as I noticed it, I cut out the Mn – BP dropped in a week or so to normal.

So now I add ONE 10 mg. capsule to my pills ONCE a WEEK, so I have a small amount available (think I), but don’t have the BP effect.

NO RECOMMENDATIONS TO ADD TO THE B1

I am NOT recommending either of these experiments. I am reporting on them.

I realize I am in the older demographic – and probably have compromised everything, and so get the side effects.

But I cannot, in due conscience, recommend anything I’m not using, and that actually caused me problems.

Maybe somebody younger will be luckier.

Will I keep taking B1? YES – daily

The B1 has not had any side effects, and I still think it give me that remaining one daily period in midday where I can actually think and write.

When I’m finished with this book, I may try again to see if the effect goes away if I stop taking the B1 ‘doses’ up to 5 times a day, but right now it’s in the category of superstitious behavior needed to get me through to publication, and I’ve done al the experimenting I’m going to do for the foreseeable future – I can’t afford the side effects of my failed experiments.

So, yes, I’m taking it.

Is it working for me?

In general, comparing to before, I think it helps 15-20% part of the time.

But I also realize I’m a more mature writer, and have made the effort to be professional about it, getting to that chair every day to write.

I may be fooling myself, but it’s not as if anyone has come up with anything else that I can be sure works.

Be careful with all this stuff – pray for SOMEONE to figure this disease out. If we had medicines that worked for pain, brain fog, post-exertional collapse, swollen lymph glands, exhaustion – and all the rest of our symptoms – we wouldn’t be looking for anecdotes.

Feel free to comment – but I have no additional information, no expertise, and no medical training.

Fear of disappointing readers: write it your way anyway

On VentureGalleries.com I commented on June 12:

“Did I say somewhere, ‘Trust yourself’? Because that’s where I am. I know exactly where I want to go – and I’m scared to get out of the very bottom of the pit. And I’m going to do it anyway.”

If I can’t write 16.1, I might as well shoot myself and get it over with.

That bad? Yes.

May 12 is International ME/CFS Day – Rant

You’re still ill?

It’s May 12 again – and, for another year, CFS – or ME – or CFIDS – or Yuppie Flu – or whatever the heck this is, it’s still with me.

Another year has gone by – and today is one of those typical days when I question my own sanity, because my brain is like a broken clock: right twice a day. You all remember analog clocks, right?

And too many people think that if you have something for a long time, it must disappear. It doesn’t – I do. I just stay home, do the few things I can, don’t give anyone any trouble – that takes energy I need for more important things like breathing.

I don’t know what the researchers are doing, but all the people I know who have this THING, the people in my real-life support group and the online one, used to be productive, hard-working, tax-paying citizens – and now the majority of us aren’t.

Living with CFS

I manage this – as well as I can.

Facing the truth: writing is a choice

Stolen time

Yet all the time I spend writing is, in fact, stolen from somewhere else. Something else that needed my attention.

By virtue of being ill, especially after almost a quarter of a century (Eeks!), I am behind. In everything.

Taking B1 for ME/CFS: consider the writer’s source

This is an update of my experiment with taking vitamin B1 to improve some of the symptoms of fatigue, brain fog, and pain that goes along with my CFS (ME). I promised to report, and I will do these updates until I’m so stable it’s boring, or I decide it isn’t working and stop taking it.

Something odd has happened. I got a lot worse again, and was wondering whether B1 was working, and what was going on. I figured SOMETHING out, and it may be significant, so I’m going to report on it for now – and update as I find out more.

The continuing saga of megadoses of vitamin B1, CFS, and writing

The problem with many experiments, especially for people with diseases like mine (CFS), is that you never hear what happened after an initial favorable report, and so are left wondering.

This is similar to what happens to news reports: initial enthusiasm over something interesting, followed by… Nothing!

***CAUTION: I have no medical training – take everything you read here as MY experience, and, if you are interested in trying B1, do your own research, consult your own medical people, read widely, and make your own decisions.***

[Also note: this is Invisible Disabilities Awareness week.]

As I appear to be one of the people with CFS (PWCs) who is BENEFITING from taking megadoses of vitamin B1, and the changes have been significant for me, and are still continuing, I am committing to reporting every couple of months until people get bored, I get completely well, or it stops working for me.

Many people appear to have good results – but I’m a writer and have a blog. I can’t stop myself from pouring details out in 1000-word chunks and sending them out into cyberspace.

I’d also like to hear other people’s results – and I dearly wish there were someplace medical we could all accumulate our anecdotal results and experience.

This is a long post because I want to be able to refer to it, so I put everything into it that I thought might be relevant.

Your results are welcome in the comments.

The B1 bomb: an exercise in hope for a writer with CFS

***PLEASE DON’T TRY THIS EXPERIMENT AT HOME – unless you’re me, of course.***
***DISCLAIMER: I am not a medical doctor, nor do I play one on TV.***

I am, however, a PWC (person with CFS) of long standing (24+ years), and can tell you that hope is a problem when you have a permanent disability or a chronic illness.

From Wikipedia comes a good definition of hope: “Hope is the state which promotes the belief in good outcomes related to events and circumstances in one’s life.”

I have always been fascinated by the concept of what happens to a person when a long period of focusing on illness is suddenly changed because the illness is cured, or improved.