Category Archives: disability

Death is the joker in the pack

Image of straw hat, and book with blue pen, open; Text: What do you want to leave behind, Alicia Butcher Ehrhardt

QUESTIONS OF LEGACIES HAUNT

I won’t go into detail here, but on June 17th, after we were exhausted from the first Open House (we weren’t there, but we had to get the house into tiptop form), we heard of the sad death of a young woman we had hoped would turn her life around. And the fact that she didn’t or couldn’t has haunted me for the time since.

I ask myself whether I could have done anything, and the real answer is no. Which doesn’t keep me from being sad.

And it is a useless question in a particular case, because it is so final to not be here any more.

Questions of privilege

I will never find out the details, nor does it matter that I do, not even to me. But it made me think about the privilege of being me, even as a woman who has been ill for 28+ years with a still-unknown-etiology disease. The resources I have are not useful to me – but are available to help with symptoms.

But I grew up in a two-parent family, with an education available to me, even to the PhD level. My childhood was no more mildly traumatic than any other – no child gets whatever she really wants or needs, and it wouldn’t be good for her little developing character if she did.

I was surrounded by love, and had extracurriculars such as Girl Guides and piano lessons. I have never been hungry because of the unavailability of food. I have always had medical and dental care. My problems in life are minor and common (other than the omnipresent CFS, and that didn’t happen until I was 40ish).

I have an addictive personality, so I’ve always avoided most alcohol, and all recreational drugs (Note: may be taking medical marijuana in the future for pain; makes me chuckle). Mostly, I don’t like the stupid feeling that comes with stimulants and such, and it’s that feeling that I’m avoiding. I did my small share of experimenting once or twice back in college, found that I hated the sensation in my gut and head, and didn’t repeat. No particular virtue there.

What if you have problems – and NO resources?

What if you have resources you can’t get to? Or they are expensive somehow? Or you perceive them as losing face so severely you reserve them for a ‘last resort’ – and never feel it is last resort time? We all try to protect our futures, and people may not get help because they know how bad it might look later on a resume.

I knew I was privileged – and thought I had earned it. I worked very hard in grad school, never took stupid chances (okay, once or twice). I thought you earned privilege by behaving correctly after you got it. Not messing up. But even as I was not messing up, I was surrounded by a safety net of people and institutions I didn’t want to disappoint – how much of ‘doing the right thing’ is simply that small deviations from the norm are immediately corrected?

My sisters and I always agreed we had the best parents around (by comparison with some of our friends’ parents). No, they weren’t perfect – no parents are – but we won the lottery there, and didn’t realize it.

I did my part, but everything went my way. There was always a path.

I have never been poor or homeless or infected with AIDS or Ebola or TB. I never had an abusive boyfriend. I’ve always had ‘people’ – lots of people. The few times I’ve sought counseling for something, I usually found someone reasonably competent, on my schedule, quickly enough. And it more or less worked, until I’d solved whatever it was, and returned to functionality.

I have, since birth, been solidly middle class.

Oh, and look ‘white’ enough (I am proud of my Mexican heritage – which I didn’t choose or earn, but it doesn’t ‘show’) so no one pays any attention.

Like a nice liberal Catholic, I want everyone to have the basics I take for granted. And that’s nowhere near what happens.

The ‘liberal’ part knows that, if there were no corruption and greed (ha!), there would be a lot more money for needed services.

Well, this administration has brought so many inequalities to light, it is hard to know where to start. Along with compelling pictures of rampant privilege, nepotism, greed, and the Gospel of Prosperity.

But I’ve spent the past couple of weeks wondering what I would have done in the same situation, and whether there is anything (other than voting the right people into office) I can do now. Other than comforting and supporting the living, where possible.

It isn’t enough for me to confront my prejudices and correct them when they’re wrong. And I don’t know what I can do, what with being sick and mostly house-bound. I’ve always known this – and never done anything about it except in trying to behave right in my personal life. Within reason.

The legacy part?

I’ve had the privilege of thinking about my writing, and the books I want to leave behind me. I have the legacy of my family and my children. I hope to be remembered for a while by friends.

And I have promised myself never to forget her. She had both potential and problems, and overcame many things, with much more limited resources than I. Just not all.

Pray for her, and her family and friends. And for the rest of us.


Hard to blog when real life happens.

And it isn’t a request for sympathy for me. Just that you think.

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BEAUTIFUL BUT BITTERSWEET

This is the view from the balcony.

The water is SO blue.

We came here for the kids, and it has been a great gift to see our three plus one significant other – for meals, for pool time, for watching Moana last night with them all in a pile like puppies.

But you can probably figure out it isn’t as easy as I would like!

There is a lot of walking (for me).

There is seeing middle son spend seven hours biking up, and then down, 10,000 ft., using enough energy in one day to fuel me for a year.

There is me being unable to walk as far as the ocean – so I haven’t been in it. They say it is warmer than the pools – which have been ‘heated,’ but consistently too cool. And the hot tubs, except for one, late at night, too hot to stay in for very long, with an annoying sign that says the elderly shouldn’t use them! Bollocks to that.

Hawaii apparently doesn’t have all-inclusive resorts, so fooding has been more complicated, and the five of them (four plus husband) have had to go shopping several times.

Why am I complaining?

Because I’m pretty useless for most of the tasks. My chef offspring have been feeding me – we still respect the matriarch enough to keep her around.

But it is mildly annoying.

And I realize how marginal I am when it comes to taking care of myself in a strange place, I who used to take care of three little ones in strange places, more or less (I’ve had ME/CFS since before the third one – who is now the designated driver on the rental car!).

It galls a bit.

I don’t care.

It is wonderful to see their bonds still intact, and strengthened by the pleasure of being together, my far-flung kiddies. This is one of my prime concerns – so many people don’t know their own adult siblings all that well any more.

I had a lovely talk with a woman from Chicago; she said the idea – get together once a year with everyone for a vacation (not an original idea) – was brilliant. I told her SOMEONE has to initiate it – or it won’t happen.

Some families have a beach house of a cabin somewhere – that probably works, but I’ve heard stories of very uncomfortable accommodations, especially as little ones come along. I think using a resort is better.

The other part is making the three of them pick the dates – so they have to work together before – and the place. That way it isn’t foisted on them by Mom and Dad.

I suggested that it NOT be around the holidays – then they’ll be able to go to their in-laws for Christmas – when travel is expensive and complicated.

They picked May. It would have been perfect had we not been right in the middle of putting the house on the market, but even that has had its good side: the painter has repainted our interior while we are not there!

So hello from Maui

And we’re leaving tomorrow. I did note it took me until this morning to wake up feeling adjusted to the time zone.

Oh, well.

Just look at the picture: it’s gorgeous here.


Reminder: royalties and page reads for Pride’s Children (above right) in May being donated to #MEAction for advocacy for us ME/CFS types – sorely needed. Thanks for all who have participated.


 

May 12 – ME/CFS Awareness Day – again

Picture of dog with its tongue out. Text: No treats for me. ME/CFS has stolen all my energy. Alicia Butcher Ehrhardt

AND AGAIN THERE ISN’T ENOUGH ENERGY TO GO

I am represented by my shoes. Thanks to the people who take the shoes, label them, place them where people stop and look and ask: my shoes represent one of the #MillionsMissing. Me.

I am represented by my fiction. Specifically, ALL my royalties for May 2018 will go to support #MEAction‘s fundraiser – because they are being activists for all of us who have ME/CFS and need medical recognition, research, and training. I’m not delusional, trust me. I’m just sick. Lots of us are. You can ignore us – and make us even more miserable than we already are. But you can’t make us go away and not be sick, and, like AIDS patients before us, we are holding you accountable for this misery – because those wo do nothing when they could are enablers of the misery.

I am represented by my blogs. This one, and Pride’s Children’s blog – where there is a new post! About me learning to use a new marketing book which may help me find the people who will read and love and be waiting for the next book in the trilogy (coming – as fast as I possibly can – this year, or next at the latest). A curious thing (to me) has been a whole bunch of people signing up to follow it and liking the posts – without ever going to that site. I suspect the word ‘marketing’ kicked some bots into gear, but traffic is traffic. It’s difficult for me to market when the people who have left 5* reviews range from young women in their 20s to older men in their 80s. I’m greedy. I want more of you.

I am represented by my Patreon, where at least one lovely patron and I are having very interesting discussions – and the patrons get to read Pride’s Children: NETHERWORLD before anyone else. Curious? Drop by and read the free public posts – and ask yourself if you can REALLY wait another year…

I’m represented by my Facebook page, which is for RL friends and family, and a few extras (it’s not all that exciting, though I have boosted a few posts).

But I’m not represented by me. 😦 Because, as happened today, the spoons went to something silly and necessary that jumped to the top of the To Do list right during one of my four naps, and had to be done that minute. Today’s energy, and tomorrow’s, are used up already. And Sunday, I already know I won’t be able to go sing – there is nothing in the energy bank to allow me to do what I want to do. And I know perfectly well I’ll make myself much worse if I foolishly try. No problem – I can do it, go sing – but the cost will be days of staring at the wall, and I can’t afford them.

Thanks to all who are doing something and going to an event for May 12, ME/CFS Awareness Day – again, since we’re still not getting anywhere, and not only are we still sick, but new ones join us every day. I’ll be there in spirit. Spirits are invisible.

Think ahead about accessibility in housing

Long flight of steps. Silhouette of human wearing pants. Test: Too many stairs. Think Accessibility. Someone will thank you. Alicia Butcher Ehrhardt

NEVER THOUGHT I’D HAVE TROUBLE WITH STAIRS

And it’s a bit of an exaggeration to think that every single home in the nation should be accessible to people with physical disabilities.

Or is it?

Odd development.

We bought this house when we were both young and childless because it was the ONLY home left in this particular subdivision, the ONLY one with mature trees that the real estate agents showed us, the ONLY one on a quiet cul-de-sac.

I fell in love with the trees.

New construction in New Jersey tends to be on former farmland. That’s because of the tax structure: farmland is encouraged, so vast tracts of land in the Garden State are technically farms, and something is planted often enough to keep this tax designation. Not for me to understand or go into the details of that.

But every once in a while, someone who needs money (probably), maybe as a result of a death in the family and land passing to a younger generation, or need for more McMansions, or whatever, sells a plot of land which is converted to residential and immediately turned into mushrooms: houses dotting the land with no trees around them.

Many of the young urban professionals who then move to the new suburbs are a bit cash-challenged, and they do minimum landscaping, so that years later the developments STILL look like blank canvases – with a few huge houses sticking up, one per acre or so, with a few bushes around the base of each.

Free exercise?

Our house is a split level. With the framed-in attic, it had FIVE levels, joined by FOUR staircases of 7, 7, 7, and 5 steps. We eventually turned that attic level into a fourth bedroom and bath – occupied first by the nanny for the two oldest, then me with the youngest after a couple of problems made it desirable for her and I to sleep together for the first year. After that, the oldest child still at home got the privacy and status of the aerie. Each in turn.

I noticed, even back before kids, that we tended to live on two of the levels – living room/dining room/kitchen plus main bedroom/master bath – and I was already limiting the number of times I’d go down to the basement.

Then I had the first two, and then I got ME/CFS, and things got rapidly worse, and then the third child…

For a healthy young mother who needs lots of exercise, and has a lot of energy, maybe wasting a bunch of it on stairs makes sense. Every time a baby needs changing, a toddler someone to help at the potty, a kid to be reminded of doing homework, a husband or wife to be called to dinner – stairs.

As a nation, we don’t plan ahead for accessibility

Grab bars in showers, clearly helpful for anyone from a young child learning to shower on her own to a mother recovering from a C-section – should be required in every tub/shower enclosure. They aren’t. I have been using the shower door’s towel rack for this for decades, always conscious that it couldn’t take real stress – because it wasn’t designed for that.

Floor plans with hallways wide enough for a wheelchair aren’t built – who could possibly need them?

MOST homes become a trap for the disabled. I can’t tell you the number of days, when the back pain from botched back surgery in 2007 was particularly bad, that I literally crawled up those flights.

And as vertical stability even on good days has become a challenge, how many times I come down one of those short flights backward because one hand holds a few things, while the better right hand grabs the rail – because we have them only on one side of the stairs.

My husband’s mom hard a hard time getting up to the living room as she aged. Was that part of the reason they didn’t come often? I hope not.

Guests from a singing group had the same problem – as we all aged, some had a very hard time (at all the homes in the group), even those four or five steps to a front door became problematic.

So, at a time when some people would like to age in place a little longer, that much-loved home becomes dangerous.

The worst part?

When you go to sell a house, often to much younger people, accessibility features that are too obvious say ‘old’ and ‘dated’ and ‘belongs to someone I don’t want to think about becoming’ – and are literally detriments to a sale.

No one wants to think ahead.

The thought of needing accessibility features some time in the future scares off buyers.

Ours aren’t too obvious – we never installed those grab bars, or added the second handrail on each section of stairs, and don’t have wider hallways (it’s a tract house, lovingly landscaped over the years) or an accessible kitchen.

I’ve never had the energy to insist on making my own home more accessible and convenient for me, since I don’t absolutely have to have a wheelchair yet, and can get around on the bad days by hanging on to things.

Do I want to stay in this house?

We’re past that point now, as I also don’t want to be stuck in this climate, and we don’t need the two extra bedrooms any more, and more and more of my older friends have either moved away or don’t get out much either.

The kids are flown each to a different State of the Union. And as far from each other as possible.

But it’s never really been an option to stay.

We moved in in 1981!

And will move out in 2018.

I don’t have a choice: I have been defeated for a long time. I just didn’t want to admit it. Or rather, I did – at least five years ago – but it’s taken this long (and some life events) to get the husband fully committed to the idea of transitioning into a much smaller apartment in a retirement community with facilities – such as a pool, gym, and daily dinner. And one with, we hope, no accessibility problems.

This time I’m thinking it through, all the way to the possible wheelchair.

There’s a reason old homesteads used to have a suite built on the main floor – the ‘southwest corner’ – in advance of needing it, for a widowed parent or maiden aunt. Good view, warmth – and no stairs.

It’s about time.

Have you thought about accessibility?


Thanks, as usual, to Stencil for the use of up to ten free graphics a month. It’s been fun to pick an image, think up some words, play with their text features, and insert at the beginning something that ‘goes with’ what the post is about.


 

Donating royalties for May 2018 to #MEACTION

Computer, coffee, phone. Text: May 2018 royalties for ME/CFS, Put us back to work, Please, Alicia Butcher Ehrhardt

May is ME/CFS Awareness Month – the big day is MAY 12th.


ALL  PRIDE’S CHILDREN:PURGATORY ROYALTIES DONATED TO THE #MEACTION FUNDRAISER FOR MAY 2018.

This is my contribution to the campaign – as a writer.


Please pop over to Pride’s Children’s blog if you haven’t seen the post (same as the Facebook post) – and consider getting or gifting a copy – this disease has millions of us WORLDWIDE missing from life. We’d love to get back to work!


 

Give us this day our daily pain

Bromeliad in green and red. Text: Any purpose to daily pain? Alicia Butcher Ehrhardt

WORTH OFFERING UP IF YOU’D GET RID OF IT?

Some days, if I squint at the daily/morning skeletal pain and muscle pain, I can call it the result of not stretching, or even ‘stiffness’ or ‘mild joint pain.’ synovial fluid in the joints needs to get moving, and the joints themselves have adhesions – everything’s, scientifically speaking, gummy.

Some days it’s worse than others. I don’t like it, but I can handle it.

But this morning, while resting in extension (like the Sphinx) on the floor, I was marveling that I’d never noticed that ‘Give us this day our daily bread’ from the Our Father has one of those little cross-linguistic glitches – the word for bread in French is pain.

No rhyme or logic to it, just a noticing.

The saints offered their pain up.

I’m not saintly or heroic, but I can do the same thing, try to handle every day with as little medicine for pain as possible (to ease the load on liver and kidneys in getting rid of the byproducts). I can ignore some of it, and a special seat cushion takes the brunt off, but there is usually enough left to be, well, significant. Too bad, and I say, “The heck with it!” and try to find something that won’t leave me groggy but will reset the brain.

Above that level, there is the way it takes over, and you do nothing else until stretching, isometrics, yoga, and chemicals are allowed, even if I end up not being able to think.

I feel for my friends who live with a lot more than I do – I had that experience as a side-effect of the various cardiac meds: every single one of them raised the pain to the I can’t think of anything else because I’m dealing with pain level. Glad the new cardiologist decided the benefits, if any, weren’t worth the consequences. Not that I would take them now, but it does help to have at least one doctor who’s okay with that; really reduces the stress.

I don’t understand offering pain up.

I’m not good at those theological bits. I don’t believe God gives other people pain or suffering that is waiting for me to offer my pain to be removed. But pain does teach you a lot about self-reliance, and getting help, and the limits of what you can take and do. Many people reduce or ignore what others magnify. I don’t see the point in taking on more just so you could offer up more. Seems like there are no good limits on that.

I do offer up acceptance and patience and such. I don’t ask Why me? because the answer is Why not me? if there’s going to be any at all. Not often, anyway.

I’m scared it will escalate – and I won’t be able to do enough to ameliorate it to the bearable level. I don’t think I’ll get rid of it any more – it’s too constant a companion.

I’m a wuss: I offer it up, but will do everything possible to get rid of it – at the same time.

Flexibility is worth working through pain

Setting sun behind woman leaping. What you give to keep yourself in shape? Alicia Butcherr EhrhardtIT IS HARD WORK TO STAY FLEXIBLE

To keep writing

Over this past week, while struggling with the chore of de-junking a house, divesting myself of decades worth of stuff, and getting my singing in, I have been physically exhausted (even though I direct the work, not do it).

The sleep I’ve been getting has been fractured, erratic, odd – and never deep enough.

So, the perfect time in life to take on another major task?

So, of course I did

As I mentioned in the previous post, I started a Patreon page for Pride’s Children; NETHERWORLD, Book 2 in the trilogy (see button on sidebar – I figured out how to have one with a link!!!).

Because, among other things, I realized that the moving tasks are ordinary. And while they need to be done, and every detail has to be supervised by me, and there has been a huge emotional content (you try capturing in a few scrapbooks about twenty years worth of homeschooling three kids!), it wasn’t hard, or tricky, or complicated, or complex, or even challenging.

Ordinary stuff. Every homeschooling family has tons of stuff to dispose of. Every family moving out of a long-time home has a lot of stuff.

But there is no great intelligence or problem-solving ability necessary; in fact, that gets in the way because methodical and utilitarian are the words that describe the process. Just do it. Make a decision: box it for the move, declare it object unnecessary, give it away.

What keeps your brain usable as you get older?

I’m convinced it is USING that brain, not letting it get fuzzy and lazy and go easy.

Starting a page on another platform for promoting your work – that’s complex and challenging. Patreon doesn’t make it particularly easy – I find a lot of applications which are developed for online and Windows use somehow seem to lack menus and a sitemap which works and guides that are more than basic – and I had to keep poking to find even rudimentary details. Such as which is the best way to get your money out (when you get any).

Inexplicably, for Direct Deposit via Stripe,  the payment page gave you a form to fill out which required banking information AND your Social Security number, but which didn’t mention fees.

And for Paypal, it listed some fees which could reduce your take.

Thus giving you the impression that even though Stripe usually costs money, the direct deposit part didn’t. Making it better than Paypal.

Stuff like that. (It’s not true, BTW. But you have to figure it out based on the amount being transferred, by going to the two payment methods’ sites and doing the mental work.)

Digging and logical thinking

It would be nice to have no fees to deposit your money earned into your bank account – Amazon does it, right? Amazon’s fees are probably included in their calculation of their cut – they just don’t break it out.

Doing this kind of mental work, hard, new, in a different and unintuitive (for me) format is worth doing – because it keeps me flexible – for the next thing that comes along.

I’ve found myself getting lackadaisical about learning tasks like how to control the network of TV and Netflix and Amazon video and Youtube – the spouse clicks thousands of times a night while organizing a couple of hours of something to watch. I let him do it, most of the time.

But watching TV is not my profession. Writing is. And I take it seriously for now, and as long as I can do it. And it changes continuously, but no one is going to make it easier for me.

So I charge in, do the work, maintain the flexibility to attempt and conquer the next challenge, and revel in the ability to still master the new.

It’s exhausting – and necessary.

And then there’s all the daily physical exercise

Which keeps the physical pain under some sort of rough control, so I neither take too much additional medication nor sit here in a haze of pain, unable to think.

But physical pain is boring. Not intellectually challenging.

So I’m not talking about it.

But I gotta get my mental ‘steps’ in, and push that to the limit.


Do you find yourself slacking off when there’s something new to be learned? Are you conscious that you’re passing up opportunities to keep the ol’ cerebrum functioning? Are you making an actual choice?


Don’t forget to visit the Patreon page  – the first chapter’s on me (pages are public), and you don’t even need to figure out how to create an account, and then have to close it. Feedback welcome, whether or not you will use the platform to read.


 

From a slow writer: NETHERWORLD in scenes

 

Not a working button; link in SIDEBAR

ONLY FOR THE IMPATIENT

Me at Patreon.

I can’t do an actual Patron linked button because this is a WordPress.com free blog (for which I’m very grateful), and you can’t sell things from them. [Figured out how to make a link available in the sidebar!!! – updated 4/16/18]

I am literally terrified to change anything on my blogs. It isn’t the money, though, unless you’re selling very well, costs can be more than you earn.

It’s change. There is so much change in my life right now, I can’t take on any more.

Plus it’s time – to figure out a WordPress.org site would take more time than it’s worth, and make NETHERWORLD even later. Seems counterproductive.

Click the link (not the fake button) – there will be a few scenes from the beginning, and in a week or so, all of the first chapter (Chapter 21 in the continued Pride’s Children numbering) for you to read.

For those who become patrons, I’ll post the scenes as close as possible to finishing them, as I serialized PURGATORY in 2013 – 2015, and they’ll get access to the completed book a little sooner than the general public.

Why?

I did this for myself, for the fun of it. I expect few of the people who say they can’t wait for Book 2, Pride’s Children: NETHERWORLD, to be serious enough about it to sign up for an inexpensive Patreon and get the scenes as I finish creating and polishing them, in my painfully slow and deliberate writing process. I’ve made it ‘pay per creation’, not monthly, in case my cache of startup finished scenes runs out.

I know I can do this – I serialized PURGATORY, publishing a finished scene every Tuesday for two years. It’s presumably going to be a bit faster this time.

There will be some extra content, available in special posts, because I generate at least 10 to 100 times more words than end up in a typical 2000 word scene during the writing thereof, and some of it is interesting.

Since I will be talking mostly to true fans, I expect to have some discussions and questions of a different sort than on this general writing/life blog of mine. If so, I’m hoping it will encourage the writing. That is if anyone signs up: I’ll do the writing anyway.

It’s a different beast from this* or the Pride’s Children blog**

For one, I have expectations of my patrons (and tell them right up front), which I’m always muting in the world in general (where nobody wants to hear writers talk endlessly about their ‘creations’).

It’ll be all about the book and the writing and the characters, and possibly the research and the ideas…

Not so much ego (though there’s plenty of that) as self-centeredness. Me, me, ME. And my book, of course.

Different focus, different content, and me as supreme ruler of… Oops! Don’t have any interest in running the world – too much work, not enough writing time. Just what I’d love to talk to people about, as they try to slip away.

(*General and writing and life posts here.)

(**The Pride’s Children blog was specifically created for those who want to be notified when NETHERWORLD is finished, and I promised not to use it for anything but that and the occasional sales.)


Finishing the trilogy and the story is still top priority

Writing fiction is still the main focus, and everything else comes to a halt when the brain and body give me a break and I can write. And I won’t be writing too much additional content/new blog posts at Patreon, but more grabbing ‘bits’ and throwing them out there from the massive archives.

And patrons can join or quit any time.

I’m doing this for fun – and for me.


Figured out how to make a link available in the sidebar!!!

Life imitates art for investigative journalism

A red typewriter with a manuscript in progress, with the words: Can a story contribute to the cause it's based on? Alicia Butcher Ehrhardt

EMPATHY COMES FROM SOMEWHERE

ALL my ROYALTIES for Pride’s Children for April 2018, Kindle Unlimited, ebook, and print, will be DONATED to: Help me help ME/CFS investigative journalist, David Tuller, PhD Public Health, Berkeley, get funding for another year.

David has been unbelievably hardworking this past year – and is up to speed. More than that, he is feared (that’s the only thing that explains it) by the UK psychologists who insist a disease I’ve had for 28+ years is both all in my head, and can be cured by 1) changing my belief system, and 2) doing more exercise.

I won’t tell you how useless it is to turn a real physical illness into hysteria. And that I would be in perfect shape if exercise helped: it is KNOWN to make everything worse for us – within very strict limits, I stay as fit as possible, but going over those limits will crash me for days.

Sympathy comes from watching someone else’s story

Beautiful real life ME/CFS (ME/CFS – myalgic encephalomyelitis/chronic fatigue syndrome) sufferer Jennifer Brea gets our sympathy, for her wonderful documentary UNREST (hope you’ve seen it) portraying her personal story, and that of others.

She’s much more photogenic than I am. The documentary was actually nominate for an Oscar!

She’s also had ME/CFS much less time than I have. I really hope she recovers – something which seems to work better for patients if they rest aggressively in the early years.

But to get EMPATHY for this disease

which has devastated the lives of so many millions worldwide, you either have to get the disease (please don’t) or live it virtually – by reading. Pride’s Children: PURGATORY lets you live with CFS for long enough to see how it gets into your bones and affects everything in your life. And yet it is only subtext to the story.

One more degree of difficulty for life, living with a tiny fraction of the energy able people take for granted.

I want more people aware of what someone with ME/CFS goes through, and it is similar to many diseases in some of its aspects. Chronic invisible illnesses hide everywhere among us, and we keep them hidden because no one wants to listen to the details.

As Pat Patterson, Amazon reviewer, says:

“You get a private tour of the life of someone living with an incapacitating disease.”

If you haven’t read, or know someone who hasn’t

This would be a good time to get them to read – even to gift them Pride’s Children: PURGATORY on Amazon.

As I’ve probably mentioned more than once before, I make about the same amount in royalties whether you buy and ebook or a print version, or borrow the book from Kindle Unlimited (with subcription or free trial). Paper is more expensive because there is, well, paper and shipping involved. But because it is a nice fat book, I’ve been able to price so that any of the formats available (including a KU borrow) have about the same effect on my bottom line. So you can freely choose which is your preferred format.

And do a little extra with your dough.


A brief description from Pat Patterson’s review:

“Kary is CLEARLY a hero, by any criteria you want to apply apart from armed combat, and she is the center of the book. She lives in isolation in New Hampshire, and writes; she suffers from Chronic Fatigue Syndrome, and it robbed her of her previous career as a physician, and gave her weak/treacherous husband the excuse he needed to rob her of her family. She has other grief in her life, but she does not share the pain casually.

“Andrew is an Irish actor/singer/modern day knight, who is on the verge of explosive fame, who values his privacy and guards it like a dragon guards his gold. Their paths cross in a late-night talk show, and sparks fly.

“Bianca is a drop-dead gorgeous actress who resents being trivialized by her spectacular beauty. She is attempting to pry credibility from the paws of the power structure, and intends to use Andrew as the crowbar.”

Hey, when your readers are so articulate, it’s much better to quote them. (Used with Pat’s kind permission.)


Thanks to Stencil for the ability to create images like the one above – their picture and fonts, my words.

The major stressor and the Gordian knot

SOMETIMES THE SOLUTION IS OUTSIDE THE BOX

Things get tied in knots; sometimes the only solution to a bad marriage is a divorce. But that applies in other situations:

Teacher/student – this teacher has it in for your kid, for whatever reason, and the only way the kid will survive is switching to a different teacher, or a different school.

Parent/child – the child must leave home to get away from a controlling parent OR the parent must eject the nestling which has turned into a cuckoo bird and is eating the family out of house and home.

Boss/employee – leave that job, if you can, before it eats your soul; fire that employee before she sets the factory on fire.

And one I’ve done once before, in many years in the system: if the main stressor in your life is a particular doctor, switch before they stress you into the heart attack they think they’re protecting you from.

The signs were many.

Doctors have different outlooks on life, differing way of using ‘guidelines,’ different bedside manners.

Because change is so hard for me and others with ME/CFS (usually entails MORE doctor visits, transferring of many records, finding the new person, hoping you don’t have an emergency until you’re comfortable with the new one, getting them to read all your paperwork…), we often stay too long with one who ‘at least fills out the Social Security paperwork.’ I don’t need that any more – but worrying about blowing a gasket (ie, stroke) from an occasional blood pressure spike is a sure way to spend your life worrying about your pressure, which RAISES it.

I had reached the point of considering my home BP measuring device an additional stressor, and the taking of the BP another. But I have friends who have had strokes, and it ain’t pretty.

It reached the breaking point a month or so ago when something (I have an idea now, but no proof) led me to have a BP spike DURING my semi-annual cardiologist visit, in their office. ONE measurement. They refused to take it again (to see if it would be coming down), and instead went to full alert.

Full speed ahead, man the torpedoes!

To make a very long story short, after having an abysmal experience with – and stopping after ten pain-filled, zombie-brained, gut-wrenching (lit.) days – another BP med, I switched cardiologists – to the one I just saw (and had met during one of my hospital excursions and noted he was a breath of fresh air then).

He says, not only don’t worry about it, but don’t measure it! He realized the process had become stressful, but that my record of measurements didn’t show a real problem. He suggested, since I need salt to maintain blood volume, and don’t follow a low-salt cardiac diet, that I might have had too much some night (yes, yes, yes! very possible – when I add salt to the occasional popcorn or nuts!). NO ONE had ever told me it could set off a spike.

He actually listened to my difficulties with tolerating meds, said I’d tried most of the first-line ones, and reacted badly, and that the next line of them would likely have even worse side-effects. But that he didn’t think I needed any.

I see him in six months, and the largest stressor on my list (death due to not taking the doctor-prescribed cardiac meds) vamoosed in a puff of smoke. Plus the secondary stress I was also ignoring: going to that office and that doctor. It’s subtle.

Changing was the right thing to do – and a serious object lesson: listen to your stress level. If a doctor constantly puts you on red alert, consider whether this is the best doctor for you. With the other one, I felt every time that I was defending myself from being put on medication I didn’t need.

Such a relief: I agree.

I should have listened. To myself. We’re not all alike; neither are they.

I was just worried the first one would prejudice the second one, and I would then have to go far afield to find… You can always stress yourself out.

And I learned that the salt I need may cause BP spikes. Good to know – will watch that more carefully.

Update on Pi day 2018: almost alive

JUST SURVIVED ANOTHER SH*T STORM

Concerned about occasional blood pressure spikes, I asked the cardiologist to prescribe something with the fewest side effects possible, and was given a prescription for an angiotensin II receptor antagonist (ARB) called Diovan, which was filled with a generic called Valsartan – and I’ve again lost ten days of my life.

After I’ve had a horrible pain and zombie-brain time with it, I start getting more detailed with my research, and find out the Celebrex (my pain med and ONLY other prescription med, which I finally found after trying about thirty other things) and Valsartan (and not only other ARBs, but also ACE inhibitors and betablockers (my old pal from last year, metoprolol – which contributed to last year’s hell, and which I also won’t take again)) are contraindicated because each drug makes the other drug less effective.

I’m getting very annoyed at people who don’t check drug interactions.

Also, people like me, with ME/CFS, are often sensitive to even small doses of meds. Starting on a SMALL dose would make a lot more sense. Maybe they think it was a small dose. I don’t. Ask my husband about my pain-filled week+. I don’t like to spend a long period of time breathing through pain I can’t seem to get control over, while worrying about the extra load in painkillers and what they will do to me and my poor overloaded liver and kidneys.

Just generally annoyed – and farther behind – AGAIN. It gets tiring. And when they don’t even call back after a week after I reported side effects (they said they would), even more.

I halved the dose, then quartered it, then stopped. Five days later, I’m starting to regain control, and my mind worked last night for a couple of hours. Woo hoo!

And yes, I’m aware I’m two days late for Pi Day, and didn’t get any pie. Hope your life is more even-tempered.

And I’m still worried about those occasional spikes. But no med will help if I CAN’T TAKE IT!

Status post March 7, 2018

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STILL HERE, STILL ALIVE

A quick update to anyone wondering why there haven’t been any posts in a while. Busy, is why, and no brain.

House:

We are moving at the moving thing. Have had professionals in (yeah, we’re too old to do this one) for almost every aspect of the process of getting this house ready for sale. A person with CFS can’t do this. A person with CFS is doing this. Ergo, very little writing stuff.

New Jersey:

Just had a huge load of snow dumped on us. And it’s still snowing. At least 4″, maybe more, and the neighbor’s car is stuck in the street outside my house. Will it finally be our last one here? Depends on Mother Nature.

California:

Still the goal (I hope), but we haven’t been able to get out there to look, so aren’t even on a waiting list. The process slowly accumulates data, though. I have a better idea of what to look for in end-of-life care after our parents have all gone before us from Jan. 2014 to Jan. 2018. They all lived long lives (91, 91, 94, and 97), and we will always miss them. Some of their later years were NOT fun – possibly we can learn from them. One thing we HAVE learned is to get out of this house and leave affairs in tidy order, because it gets much harder with age. I simply can’t imagine how other people wait until they’re 85!

Writing:

Still working on getting reviews – just got a very nice one from the Midwest Book Review. Found a few tiny typos in PC1, and am just perfectionist enough to be in the middle of reloading the corrected files, and just human enough to tell you there are two errors of typography that I cannot correct. I have failed, they “doesn’t shows,” as my Uncle Charlie would say, and they will stay there to avoid tempting fate. 2011 Mac version of Word is to blame, and no, I’m not telling you what they are. I have some Pride.

Pride’s Children: NETHERWORLD

Sent off the next finished chapter to my beta reader last week. I am proofing and editing solidly before sending things out now, a chapter at a time, but long chapters (13K) take a while to research, write, and edit. I hope the rest goes a bit faster, but can’t wait until I’m someplace else and all the junk is gone, even if I have a simple table and one chair.

Health:

Finally agreed to try a new blood pressure med, Diovan, an “angiotensin II receptor antagonist,” whatever that is, supposedly with fewer side effects. After the debacle of last year, the only thing that made me reconsider is that I’m under quite a bit of stress right now, and occasionally get BP spikes in the evening, an alarming state of affairs. If I can find something I can tolerate that does its job, possibly I can avoid blowing a gasket until we’re resettled. Started up my cardiac rehab again (up to 75% of before) after getting the flu – and being out of commission for three weeks. Plus the flu gave me higher blood pressure, and kicked my nice low 60-66 heart rate up to 100 – MOST uncomfortable, because I COULD not meditate it lower. There are many reasons your BP can be up – perfectly reasonable reasons, but that doesn’t protect you from the consequences, so I’m being sensible. Again, assuming I can tolerate something. Not hopeful, but maybe it’ll give me a breather. Oh, and I’m in the process of finding a cardiologist who doesn’t RAISE my BP. Wish me luck. NOTE: since I started taking the stuff 3 days ago, I haven’t been able to THINK, but then there is that stress…

So that’s it, my pretties. Boring as all get out, but you are updated in case you were wondering, and I’m trying to do about ten times more than I can (sang in church again, FINALLY, the last two Sundays). And resting aggressively so I can be there mentally for my assistant as I am the final arbiter for dejunking. Hate it, hope a lot of it will be over soon, and I can get back to my nice calm writing.

And how are YOU?

The house where Pride’s Children was written

AND IT WON’T BE MINE ANY MORE

If God gives me life and brain, I will finish my epic love story, Pride’s Children, in a couple of years.

Sometimes place is important. One thinks of the Brontës writing in the rectory on the moors, and wonders if it was a cold and dismal place, or a warm and cheery one. Did they have one room they kept cozy and tended to congregate in? I could find some of my answers if I took the time to look.

Sometimes I think that Kary’s house, Sanctuary, is more real than my own. I have put more thought into how it should be.

We have lived in this house, only the second one we’ve ever owned, since March 5, 1981, which is a very long time in these moving times. We have been its only owners.

My children have known no other childhood home.

As I have become more home-bound, I have spent almost all my life in the south bedroom, with a window that opens to a quiet court ended by a cul-de-sac, where the kids all rode their tricycles and bicycles and drew in chalk on the pavement.

I insisted on this house – because the neighborhood had – and has – mature trees everywhere I look. With so many developments built on cornfields, and so many owners who don’t bother to plant a tree when they move in, the new developments have a raw look to them.

I dislike the American house which often shows its concrete foundation, stained by water and rust, like a dirty petticoat peeking out from under a lady’s skirt, long after it is built. As if we should all politely ignore all underwear hanging out. Bushes are planted – which never cover that bottom foot of dirty grey.

Ours has bushes to the ground.

Abandoning a home deliberately is something new for me. I love this one in some way, for its memories, but I’m still here, and the memories are all I have. Already. I don’t want to go start clearing the debris of the winter so the bulbs can come out – I’ve done that too many times; now it’s accompanied by the pain of sitting low, and the sleepless nights that come with the pain.

The kids come very rarely, and are not into dance lessons and Scouts any more, so there is nothing for them to do. They often take the train to NY, and spend the day having fun. Without me. One wanders up to Princeton for a good walk and a bunch of Pokemon Go sites. Without me. Or walks to a local park, ditto.

I face the stairs every day. Sometimes I have to go up in an undignified way. I don’t understand why that doesn’t bother other people a whole lot more than it does. If it were them, and me watching, I would have gotten us out of here years ago. No, I have no desire to stay here – with my sewing machine sitting unused in the little attic closet I turned into a sewing room. Because I have no reason to sew. No costume for Halloween, no dress for a prom. My own clothes, which I started making when I was 14, now come in the mail.

I want to make a new home

While I still can. While I can adjust to a new community. While I can meet new people and do new things with enjoyment.

I don’t even want most of our furniture. The dining room table takes a beating when you’re homeschooling three kids at it. Much of the kid furniture was IKEA, assembled on the spot and not really capable of being disassembled successfully. The nice bedroom set, with the light bridge, is too big. The solid oak kitchen table, carefully hand-finished, and in perfect shape, is too big. Somehow or other, over the last two years, it seems every dining room chair needs re-caning and refinishing (I TOLD them not to lean so hard), and the wheels on the kitchen chairs we’ve enjoyed rolling around are destroying both the chairs and the floor.

This house needs a healthy woman in charge. And people who like to do things at the workbench in the basement. I’m not that woman: I did my time.

But somewhere I need to leave a plaque:

In this house, between 2000 and 2018, Pride’s Children was written.

The beginning of it, anyway, because NETHERWORLD won’t be finished here.

There are places I could leave such a plaque, places I know, places behind – where a new owner won’t even know there is a place.

The written record

If you’re a writer, and have a thought – a blog is the perfect home to let it run free. Who knows – some day you may gather your thoughts in words, clean them up and organize them about a theme, and publish them.

I look at this blog, with over five hundred posts since I started in 2012, and I know some of those posts would make a different kind of book on writing, and others would document the production of my own epic – and marvel that the format allows them to still be there when I’ve moved on. I really ought to go see what is there. Might make for some interesting archaeology.

I’m finishing this at six a.m. because the ice dancing at the Olympics put an earworm into my brain, and then I got hungry… You know the drill. It’s a good time for humans to get nostalgic.

How think ye?


Thanks again for Stencil‘s images – consider them if you need a source of them for your own blog. The pictures make me think, and then we’re off on another wandering trail through the writer’s brain.

The Discipline of the Long-Distance Writer

SITTING HERE – RESTARTING MY BRAIN

I am NOT a sports fan, but Philadelphia is around the corner, and I’m pretty sure they put a great amount of very hard work into preparing for their win. As did the other team – so there is that elusive luck quantity about peaking at the right time, and having everything work out when you need it.

BUT: it is not luck that wins most times. It is luck on top of preparation. Most ‘overnight successes’ aren’t. And if you have the great win right out of the starting gate, you still have to do it again – witness the number of debut award-winning novels whose authors can’t repeat the win. And are never heard from again (unless they whine about how hard it is in the pages of The New Yorker.

Everything about Cary Tennis’ aphorism:

The most heroic thing a creative person can do is to live an orderly life so the work can get done.

is true. I don’t get anywhere without hours at the keyboard.

I’m acutely aware that, because I start at such a low level every day, a little thing like the cold that is messing with my mind is enough to render me useless to my chosen profession for both the days when I’m actually sick, and the aftermath days when I wonder where the Mack truck came from, because everything aches.

It’s not the pain that bothers me – lots of people live in pain. It’s that after a certain amount, I can’t think. And I’m way over that amount right now, sitting at my computer trying to think.

Priorities

When you have choices, at least some of the responsibility for what gets done in your life is yours. If you choose to go to the gym regularly, your body may be stronger and more reliable. If you could, but you don’t, the deterioration or lack of strength is partly your fault.

I have to get back to my basement exercises as soon as I can breathe normally, so I don’t get worse.

One thing at a time!

Use what you have in your writing

I was wondering where that extra edge of tension would come from in the scene I’m writing, and it occurred to me that I’m living it.

A common phenomenon for people who live with ME/CFS is the PEM crash. PEM – post-exertional malaise – is another one of those phrases which minimize a real disaster. PEM is really post-exertional exhaustion – a crash that can last for days after you do something more than you could really handle at the time. A crash that is made worse by trying to do things before you’re past it. A crash that is created, somehow, by taking energy out of your muscles with adrenaline.

I don’t know if it’s the adrenaline itself, being very slowly processed by a damaged liver, or if something else in the fragile body system is triggered by the push that precedes the crash. There is no known cure, though fluids, proper nutrition, and LOTS of rest can help.

It is another of those realities which cannot be ignored.

We’re watching the Olympics, and hearing about the athletes pushing through their pain and damage. And about permanent damage that can end an athlete’s career. Sometimes, they can work through the pain; sometimes, if they do the hard rehab work, they can improve their performance. Sometimes they try to ignore it; sometimes that works, or works long enough for them to achieve the next milestone. Hard to know whether they can take the chance – and win in spite of an injury – or whether, this time, it doesn’t matter how much pain they can tolerate in a broken foot, because they still can’t use it right.

I always come back

So far. Eventually.

But I’ve both speeded up (due to experience and practice) and slowed down (due to having been ill longer, and, that favorite of everyone, getting older).

I’ve reached an odd-enough spot that I want to document it, to see how to improve process, if possible, or to just move it along this time.

The immediate projects are competing fiercely

And they are getting done – albeit at a speed that would make a tortoise cry: my parents’ final tax returns (VERY long story) have been in the mail long enough that it’s the IRS’ problem, not mine. Yay! But talk about soul-sucking, useless tasks that teach you nothing you can use in the future.

I have a couple of small typos/errors I want to fix – but will have to re-load all the information about making files for Amazon and CreateSpace into my head, and then learn the new task: how to post a change in a published work. Good to know, not so easy to acquire; I’ll have to take notes, too, or I will forget.

I’m putting off working on putting Too Late, the Pride’s Children prequel, up on Amazon because it is TOO SHORT, and I fear a backlash. From whom? Dunno. But my fertile mind throws up roadblocks whenever it can find them. It would throw up roadblocks if I decided to STOP WRITING and just ENJOY OLD AGE. So it’s no reason to stop.

On the record: I am now more afraid of doing a short story wrong on Amazon and forever ruining my reputation than I am of having gotten my parents’ tax returns wrong and being jailed by the IRS for tax evasion. Easier to laugh at that once I’ve pinned it to a blog post.

The long-term move is back on the horizon

We have to get out of this house. Not because it isn’t lovely here – it is – but because the maintenance is something I can’t help with any more, and it is unreasonable to let the husband do it all, and difficult to find people consistently to do it for you. Plus the complete social isolation of rarely getting out of this room.

But now, following the last days of all four of our parents over the past three years, we have a whole lot more questions to ask and details to worry about that we hadn’t even realized – and won’t be in a position to control at whatever age they happen, because you are not all that functional at that time of life. Way too many things went wrong. Things like nurses in the hospital who won’t make the effort to make sure their patient can HEAR them. Things like ‘hospice’ – a lovely idea from the 70s – having been turned into another Medicare supplier which is farmed out to the lowest bidder, and has failed, dramatically, when most needed. They don’t even have hospices any more – just services dependent on funding and staffing. Once would have been bad luck. Twice is systematic.

So the thought of moving near where at least one of our children might locate permanently (San Francisco), rather than generally to California and taking care of ourselves, has reared its ugly head to mess up the choices. But most people don’t move out of a retirement community once they’re in (except when they can’t pay for it), so choices made now are crucial for the future. When we won’t be in a position to make them for ourselves.

This is what I do when I feel a tiny bit better

I hope being able to think a few things out, and blog about it however lamely, means the cold is on its way out. I’ll still be a dishrag for a couple of days, but the drive to write SOMETHING, and to try to make it coherent, first comes back when I realize I haven’t posted in a while.

And if I can use that idea in the scene in progress, well, I won’t say it’s been worth it, precisely, but I may be able to profit from it anyway.

And here we go. And there’s another bunch of semi-connected thoughts out of the mind and onto the page.

And I’m more terrified than ever of getting the flu!

How’s your winter going?

The Greatest Generation is now gone

AND, UNTIL IT’S YOUR TURN, LIVE

At the beginning of 2014, my children had four living grandparents 90 or over.

As of last week, they have none. Husband’s dad, a good man, at 97, the last of our beloved parents, now knows if there is an afterlife or not. Our parents are missed, and there is nothing anyone can do about it except remember them.

It is sobering to think about now being the matriarch and patriarch of anything: husband and I are both eldest children. My parents did that so well for so long, and I can still remember my grandparents in Mexico doing the same thing. And I am not capable of doing any of what they did, keeping the family together by having everyone over for dinner on Sundays or Mondays, holidays and birthdays. I have been the beneficiary, and can’t pass it on. Our kids are currently in San Francisco, Boulder, and Troy, NY.

I have so many stories, and I have passed them on (ask my kids – I’ve talked their ears off), but I have not the energy to write many of them, not while I’m still writing fiction myself: there are only so many hours in a day I can use, and stories are best transmitted in person.

Making new traditions

I have come up with the idea of us going to a resort once a year, all of us. Not at Christmas or Thanksgiving, but at a convenient time. We can see each other every day, spend time with slow Mom on the beach or in the pool, and then those who can will take advantage of whatever the resort and local area have to offer, and maybe gather for dinner. For that talking part. A way to bring together someone with no energy and descendants with it in abundance. As long as the old folk can travel.

This way, I reason, they can go to the in-laws (when they have them) for holidays without trying to be in two places at once.

We’ll see if it works out; but we can’t maintain the family homestead, an awkward but much loved house with way too much space and maintenance, and too many stairs, just so the small clan can gather at a time when travel is horrible and in a place (suburban central NJ) where you have to go elsewhere to do anything. I have failed the task of ‘everyone is going to Grandma’s house.’

So be it.

At home in Mexico, a gigantic extended family still gathers – but we don’t go.

Now to focus on the two of us

I have to make my tiny daily allotment of energy cover getting out from under the responsibilities, which are becoming overwhelming (mostly for husband), and out of the social isolation which comes from having little energy to go anywhere.

Selling a house and moving, possibly cross-country, and settling in to a retirement community, is non-trivial, but it is only going to get harder. Most people leave it too long, and move in a crisis. I need things I can’t walk to here: a pool, a gym, facilities like a sound studio – and many of the Continuing Care Retirement Communities (CCRCs) have them. We need to find friends – ours here are moving away, or are no longer with us.

And I am aware of how delicate my ability to write is: everything that has come along has stolen days worth of writing because it needed that focus and clarity I can only achieve for a couple of hours a day at most.

The last of the big brain-sucking tasks,

finishing the tax returns for my parents, who were both American citizens even though they lived in Mexico since 1957 (and Pepita when she was a child), was finished yesterday. Daddy’s went with the postman.

I gritted my teeth and filled out Mother’s immediately following, aware that if I set the second task down I would have to learn from scratch all the tasks and arcane instructions – when I could force myself to do it again some time in the future. It was such a huge task (for me – not for a normal human), and consumed so many hours since June 2016 when my sisters gave up and asked me to do it, that I despaired of ever finishing. Mother’s is sitting in a sealed envelope for the postman today.

Each return was four simple pages. Above the surface there is no evidence of the frantic paddling below that reading and filing take, IRS worksheets and arcane bits from processes intended to make it hard for the very rich to take everything with them (ie, hand it over to their rich heirs). To finally end up at the same point for each detour: $0.00 – insert in box X of form 1040.

And on the bottom line: no tax owed. Which is good, because, IIRC, IRS penalties for filing late are some percentage of the tax owed.

I made every mistake possible during my filing of this twice-in-a-lifetime (mine) paperwork, including, yesterday, deleting the just completed return by writing the IRS instructions over it. Don’t tell me I should have let a tax accountant do it. Just believe me that it would have been far worse, and on someone else’s brisk timetable (the horror!).

I can do this stuff: but it takes days’ and days’ worth of all the energy I have.

And I learn nothing that I can use again. I fervently hope.

I’m a writer now, and still working

I plan to finish Pride’s Children, Books 2 and 3. Several nice people have claimed they’re waiting for the rest of the trilogy. As long as life and brain hold out, that’s the plan, and I’m very aware it doesn’t depend on my intentions. I hope God isn’t laughing too hard.

With the latest marvelous review, I have made some new connections on Goodreads, and possibly learned some useful marketing tips.

I despair at where the energy will have to come from to do a better marketing job, but obscurity is the other option, and I’m not happy with that, either.

When I do settle in to the writing, though, the deep pleasure is still there; my beta reader is content and says I haven’t lost it; and I still experience that moment, for each scene, when it all clicks and I know: that’s the way it really happened.

Given that Olympic skiing is off my list of possibilities, I’m glad I have the writing one for the story only I can finish.

There is so much yet to learn

A huge part of life is doing the best I can so that, if they every figure out ME/CFS, and it isn’t too late for me, I will be able to take advantage of the medical research, and maybe write faster. Or go skiing again.

My support group on Facebook has other people like me, and invaluable sustenance (as well as overwhelming loss). We CFS folk have little hope, but losing it all hasn’t happened for me yet.

If I did, I have no idea what I’d do all day.

But we are the oldest generation now, husband and I, and we don’t give up. Yet.

That’s why I’ve been missing from the blogging world. Hope you’ve all been okay.