Tag Archives: disability

Boosting Jennie Spotila’s post on dancing

Little girl in bikini dancing on beach. Text: Dance. It's good for you. Alicia Butcher Ehrhardt

TODAY IS ME AWARENESS DAY

Jennie uses her inability to dance as a metaphor – the entire post (and her blog in general) is always worth reading.

This excerpt chilled me, because we’ve been TOLD, by the NIH (National Institutes for Health) and its director who has been ignoring us for decades, Dr. Francis Collins, that we’ve getting DOUBLE the research money this year that we had last year:

If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.

ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.

NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.

DOUBLE OF NOTHING IS NOTHING. Remember that – it’s an old joke.

Please read her whole, excellent post.

Dancing is a human right

No one should stop you from moving except yourself (and we all had that desire to move as small children, so ask where it went, if it’s gone).

Moving freely in your body, with energy, is a human right (and we’d be attached to rocks if we didn’t have it). Except I can’t any more, and haven’t had that energy in a long time.

I gave my remaining love of dance to my character, Kary, in Pride’s Children, because I know what it is to dance for a short while in my kitchen – something I lost years ago to both the ME/CFS and my back problems – and miss daily.

The end of Chapter 16 in Pride’s Children: PURGATORY (Andrew comes back unexpectedly to pick up a script):

Dance excerpt 1, PC1, Chapter 16

Dance excerpt 2, PC1, Chapter 16

I kind of like this one.

I REALLY miss dancing.

Shall we dance?


Remember, my royalties for May go to the fight against ignorance and lack of research.


Thanks again to Stencil, for giving me the free image (the words are mine) of a little girl dancing on the beach. It was perfect.

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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.


 

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.


 

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!

New review post on Pride’s Children site

NO RESPECTER OF PERSONS

If you’ve wondered where I’ve been, part of is these last two weeks has been entertaining a guest: Mr. FLU.

And yes, I did get the flu shot back in October (I always get one), and every year as far back as I remember; possibly that’s why the worst effects lasted about a week.

But getting over the whole thing is no picnic. I am on tissues with extra softness – by necessity. I can’t wait for my heart rate, which went up to 100 bpm and stayed there for days during the worst part (normally, for me, around 60-66) is driving me crazy because it is still hanging up there at almost 80. It’s exhausting in itself.

Life and my Universes

Also had lovely houseguests.

And today, by dint of I don’t know what force, I finished a scene I started, according to my notes, on Jan. 21. Way too long, but had only sketchy notes as to what absolutely had to go in it, no rough draft for this one, and no brain. I swear it feels no different, finished, than the ones I have more to go on than a title and several Dramatica appreciations. I even listened to it in the robot voice, and can pronounce myself satisfied (if I ever get there).

New post (with cookies) – thanks, Stencil.

New post at Pride’s Children with a lovely new review that has lifted my spirits.

Said spirits have been on a rollercoaster ride; still trying to figure out how to post about the stress load I’m carrying – and will be until we’ve moved.

Be well.

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.

Does your character make readers uncomfortable?

WHAT CHARACTERS MAKE READERS SQUIRM?

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

Specifically, your DISABLED character?

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

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

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

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

Disabilities in real life

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

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

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

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

But there is a different way for a writer: reality

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

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

An Amazon reviewer:

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

Disability is a learning experience

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

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

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

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

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

FICTION = EMPATHY

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

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

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

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

It is MUCH harder to market.

I still think it’s worth it.

Do disabled characters make you squirm?

Is the artist in the way of the art?

IS THE WRITER’S APPEARANCE A DETRIMENT TO HER OWN WRITING SUCCESS?

When I was growing up, books had plain covers (no representative art), and the only means of interaction between reader and writer were the words on the page.

I usually skipped things like Forewords, and if I read the author’s bio, it was a quick pass, more destined to reinforce his name than anything else, so if I liked the work I could find more by him.

To this day, I have no idea what Robert Heinlein looked like, and only know what Asimov looked like because he was a bit of a media hound (and I had him confused with Einstein, which would have tickled his fancy. I think.).

There are statues of Marcus Aurelius, in stone or bronze, I assume – never even thought to look.

Modern digital life has changed all that

It is almost annoying when an author goes to a great deal of trouble not to let readers know what she looks like.

I prefer actual current photographs for avatars.

It is a problem for those with multiple pen names.

And I wonder just how much it influences the readers, especially in some genres.

Should Romance writers be pretty?

Humans who have sight are very visual creatures. It is estimated (somewhere) that 80% of our energy goes to dealing with visual input.

We react negatively to ugly things – after millenia of evolution that correlated ugly things with things that were often bad for us, such as rotted animals or toxic snakes.

Other things, such as the thickness of the ankles of young women in countries where sunlight was insufficient part of the year – which is an indication of ricketts, a disease which might also have affected her other bones, and make her more likely to have problems in childbirth, have gotten folded into our standards of beauty: thick ankles = not attractive.

I notice the way authors present themselves (check out Kristin Hannah’s Amazon author page) – and wonder how much that affects her sales (she’s gorgeous, and that’s a great photo). Wonder how any others can compete.

Do readers wonder if any of what’s in the stories is based on experience?

What about opinionated authors?

What do you think of authors whose claim to fame includes a very solid amount of in-your-face-ness? Are you more likely to read their books?

I loved Rudyard Kipling stories; reading about his attitudes has put a bit of a damper on reading his books, and would make me think hard about gifting them to a grandchild if I had one.

I make judgments about people based on their appearance

All the time.

I also immediately catch myself at it now, and look at those judgments dispassionately to see how much might be true. I have managed to change my own opinions quite a bit by a continued practice, and no longer automatically make some judgments which used to bother me a lot because they were so automatic, and couldn’t possibly be true.

But I’m wondering if, in the race for sales, those who look good have an unfair advantage. Again.

At least in getting started in the race.

Choose how you present yourself online

Not suggesting this should change, but I can’t quite stop making those automatic judgments about the photos that people choose to represent themselves with on their author page. Or avatar. Or book cover.

The good thing is that it is usually just at a few places, say Amazon, FB, your blog, and they don’t get to see what you look like first thing in the morning.

I need to work on that.

Do you ever think about how you are influenced by what you ‘know’ about an author?

Fiction: the SECOND-BEST path to empathy

DIRECT EXPERIENCE BEST PATH TO EMPATHY?

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

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

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

Because direct experience doesn’t include another person.

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

Fiction is a largely underused way to deliberately develop empathy

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

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

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

I’m reproducing the whole post here:


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

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

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

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

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

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

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

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

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

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

Reading is just you and the book.

Oh, and the author.

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

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

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

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

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

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

The author’s power is very real.

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

Sounds horribly preachy, doesn’t it?

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

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

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

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

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


Why repost my own post?

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

 

The slow posts of summer 2017

THE SUMMER SLOW DOWN IS ACTUALLY A SPEED UP

This is a stub, a placeholder, a tente-en-pié (keep you on your feet), an appetizer – lagniappe?

Any one of those words that means a quick update and not a thought-out post with a point.

Why? Because when other bloggers stop blogging, I worry a bit.

Don’t want you to worry. There have been no recent crises – Yay!

On the To Do list:

Writing NETHERWORLD. Yup. Main A1 priority that keeps getting a day here, a day there (the least efficient way for me to write). And publishing Too Late.

Finding a permanent place to live – for which I have, up to now, processed more than 110 CCRCs (Continuing Care Retirement Communities), most of them in California, to see if we can 1) afford them, and 2) find a community we’ll fit into.

Paperwork for my Dad’s estate, too long on the to do list, but the IRS has made each simple step complicated. I will persevere.

Getting healthier. Here I would like to report slightly better walking capacity (after days and days and days of lower back strengthening exercises), and continued cardiac rehab (though I haven’t been able to increase it much since I started, I’m now into my fifth month, which is some kind of record).

Dejunking the house prior to getting it on the market. This means the Christmas tree came down this week. You may applaud.

I think that’s the major ones.

CCRCs in California

The why? It’s drier (humidity and I don’t get along), and the places we’re looking at have better weather. I have been warned – not all places in California have ideal weather. The spouse put me onto the idea of getting an idea of each city from Wikipedia (who knew each has a page?). If there is a Climate section, the little graphic illustrates temperatures, rainfall, and sometimes humidity for a year – which is exactly what I need to compare, say, Sta. Barbara and Bakersfield (nice, not so nice).

I now have had hour-long conversations with about 21 salespeople (the shorter list), along with getting electronic and snail mailed information, and followups. I learned a lot.

The basic information on the websites seems to be 1) we have apartments and/or cottages, and 2) we are the best CCRC in California. So there’s some hype.

Considering that one of the major decision factors is cost, you’d think they’d be a bit more up-front, but if there is information at all, it is usually, ‘from (quotes entrance fee for tiniest unit and monthly fee for one person in it.’

Not very useful or realistic, and I hate to hang up the minute someone tells me the actual numbers (which implies I couldn’t go). The reality is that we have some choice in the matter, but a place is going to have to be perfect for us to go for the higher costs (and most of the for-profit places in the San Francisco area are simply not an option).

I’m to the point of running numbers past a calculator and guesstimating some scenarios on how long we’ll live (always a fun exercise) and how long we’ll need what kind of expensive assistance to do so.

Dejunking is slow going

Not because I can’t get rid of stuff, but because doing so requires me to give my assistant (who’s been a little erratic due to real problems) permission: ever single item in this house not in my husband’s office is my problem.

And some of it has to be kept around so the house doesn’t look razed when we show it.

My brain will tackle that problem far better when it doesn’t need to do phone calls and financial calculations with its little bit of energy, and we have a very short list of places we would willingly move to tomorrow.

And when the heat and humidity abate a bit, and we can stand to dejunk the garage some more.

It’s amazing how much stuff goes when an assistant takes it to its next owner for you (or makes it disappear). Until you get down to family photos and the CD collection you always meant to put on a hard drive.

Exercise, walking, etc.

Here I have to be extremely careful. We CFS folk can overdo things in an instant – and have to pay for it with days of getting nothing done, and huge amounts of extra rest.

I’m so far over capacity already with all the extra stuff on top of what I had before that all I have to do is go to a meeting with the financial advisor (a short meeting, he said – ’twasn’t) to lose two days.

I’m looking forward to living in a CCRC where the plan will be: write in the morning; get more fit/relax/float in the pool/do a short stint in the gym/walk to dinner, in the evening.

I swear.

Meanwhile I have to keep the spine from insisting on more surgery (so far, so good, and I don’t trust any of the surgeons I’ve seen). This requires daily exercise and stretching. Lots. The stronger the spine gets, what do you know: the easier the walking has become.

But we’re talking micrometers. I know – husband can’t even tell. And it’s made me do things I shouldn’t have done (leaving the walker in the car for something that turns out to be a longer walk than I planned is the #1 problem).

And the perennial: removing a few pounds from the joints would probably help; meanwhile, don’t add any.

Removing all cardiac meds made a huge difference to all of the above – zombies aren’t good at becoming healthier. Doctor doesn’t even want to see me for six months; BP and HR are behaving themselves nicely with meditation and rest and the rehab (I guess – had to tell).

The career as novelist

Taking a bit of a beating right now, but moving.

The biggest other time-eater is learning and running Amazon ads. I find I don’t do well when the sales are way down (depressing) because I’m not hand-selling, and going viral isn’t happening on its own.

Which means advertising. The last email I got (review pending) had ‘Loved it!’ four times in a row, so I do have a tiny tribe, but I have no reach – and everyone else on the planet (with energy) is writing bunches more books and ads.

I’m trying various targeting ideas. If any of them work…

But the very best time I spend, exhausted or not, is when I’m in Bianca’s skin (today) or Andrew’s skin (last week) or being Kary for a while (right before that). And that’s still good, if a little claustrophobic: I have to get awfully close before I can write them.

Drop a line

How’s YOUR summer going?

 

 

 

 

 

How to pick a forever home

CHOOSE VERY, VERY CAREFULLY!

I’m in the middle of a huge search.

For a while now I have been staring the rest of my life, so to speak, in the face.

It has become – even before the events earlier this year which resulted in three stents – very obvious that living in a 4-bedroom, 2.5-bath NJ suburban home was becoming untenable.

Like the older pet which needs to be rehomed so it can live out its remaining days in relative peace, I can’t handle the little I used to be able to handle of my life – without some major changes.

ALL OF THE FOLLOWING ASSUMES YOU HAVE SOME CHOICES.

When you have no choices to make, you live the best you can, going along from one step to the next as well as you’re able. Your choices are dictated by the moment, by an illness, by something external you have no control over.

To a large extent, this depends on prior choices – did you take care of yourself physically? And did that work for you? Did you put some money into savings – assuming there was some to spare? Have you invested in a house which can be sold now? Are you able to move if that’s the best choice, or does something anchor you in place?

If you are poor, your choices are limited all the way along life.

If your health is not good, your choices are extremely limited. I’ve dealt with that one myself for 27+ years, with no end in sight; any change in that part of my life will be created, within the disease of CFS by me, and without, by some unknown researcher some day. Even if a cause and treatment are found, or a treatment only, there is no guarantee that it will reverse the damage I live with. Me managing like crazy, just to stay on a slowly-declining plane, is already doing the best that I can.

If life is unkind, you are already stuck, but there may be a possibility of becoming unstuck some day.

Facing the facts in time

Many people wait too long to make the decision where to go, what to do – and end up making that decision by accident, when a life crisis comes along.

Friends of my parents gave me a model. I didn’t understand it at the time, since they were living in a fair amount of material comfort in Guadalajara, but they went and bought into a community in, I believe, El Paso, TX. J at least was an American citizen, and one or both of them would probably have had Medicare by that age, and possibly they wanted to be in a place with access to American hospitals and healthcare. I know none of the details, but it seemed odd at the time (my own parents didn’t do the same, due to large extended family in Mexico City, and more limited funds) because of their family in Guadalajara, but now I see they were making a decision for a whole bunch of things while they were still capable and competent to make those decisions.

It has stuck with me, even though it has taken until the last couple of years for me to see the why.

I began four or five years ago to seriously consider the future. The kids were not all launched, but that time was coming closer.

I remember pointing out the advantages to a planned change – rather than a chaotic one induced by circumstances – to a colleague in a support group who was older, and whose wife was older, as well as to family.

No one listened; and the colleague’s wife now has advancing dementia – making it very difficult for him to move, for her to adjust to somewhere new, and for her to help in the decision and the move. Family has reached a different solution, and it was as a response to crises, just as I predicted, crises that might have been avoided.

The stories are everywhere: people whose parents refused to ‘be put in a home’ until a major illness or crisis caused a non-optimal solution to be hastily implemented. People who didn’t move until one of a couple faced significant health problems, at which point it was too late to enjoy the move.

We are fortunate to have options

Which is almost funny, since the story of my life lately is that I’m completely out of options.

I preach the necessity of disability insurance, if it is at all possible (and recommend you pay for it yourself – which has huge tax advantages if you need it), because you are five times more likely to become disabled during your working years than to die – and everyone has life insurance, but most don’t have disability insurance. Private disability insurance goes beyond SS disability (which is downright stingy): it kept us middle class when I became unable to work.

Consider also the possibility of a disability lasting long enough that you really need some built-in inflation protection. I had none, and it really hurt.

I would have been able to save more money had I worked. I prefer working – keeping myself sane these many years has not been easy.

So, facing the decision of what to do with the rest of our life is happening with me still sick, but with some retirement accounts and a house which can be sold.

The parameters to the decision

I am fortunate to have a living spouse in reasonably good health – right now. In fact, I would like to preserve that health: when he goes out to clear the snow or mow the grass on a hot humid day or prune bushes standing on a platform, I worry. I used to help with the snow – can’t do that any more (but he FINALLY bought a snowplow). I used to do a fair amount of the weeding – can’t do that any more, because sitting on the ground or a low chair or bending over cause significant pain over the next couple of days, and that heat and humidity are probably what landed me in the hospital this last time.

So he’s doing ALL the work, and even with some help from an assistant, he’s still IN CHARGE of all the work. We had people last year; they were ultimately unsatisfactory.

Taking care of house and yard consumes too much of his energy, all of mine, and just has to be done again. That doesn’t even take into account ‘things that go wrong,’ such as the roof or the AC or the driveway or the trees that die.

So, the obvious is a place where we do none of the maintenance work, in or out.

Another stressor has been how hard it is to leave the house to go somewhere for a vacation, added to how long it takes us to pack – and leave the house so someone else can do the bare minimum. Homeownership had its joys when we did everything ourselves (BC – before children); then it became just work while the kids were home and things got done when they had to be done, in among all the other chores; now it’s impossible.

Pet care – you’d never believe how hard it is to take care of one tiny chinchilla, and how difficult to arrange for someone to keep her alive while we’re gone. Impossible without an assistant (thank goodness I have one now for a few hours every week), still tricky even with someone who potentially can drop by every couple of days to make sure Gizzy has food and water and the AC hasn’t died (if it gets too hot, she won’t make it – that thick silky fur coat). Already seriously considering finding her another home (anyone want a slightly spoiled chinchilla?), and am making sure anywhere we consider allows pets in case she goes with us.

These will be the best years we have left

Seems obvious, but we’re not getting any younger.

I want a place where I can make the big push for 1) getting as much exercise as the CFS will allow, 2) making the best use of any improvements in walking ability, 3) hoping that reduced stress will contributed to better overall health and mobility.

This means I need a year-round pool and gym, and PT people on-site, somewhere I can actually get to without spending a day of my energy.

And we need bike paths. Even though I can’t go far, not being able to walk doesn’t mean I can’t ride a bike! My limitation is actually the energy – I can go short rides, hope to be able to increase those a bit.

And I want good weather: in NJ, if you miss a ‘good day,’ there may not be another for a while. I grew up in Southern California and Mexico City, where weather was a stable thing, and the next day would be much like today, and both would be pleasant. Then, going out to do something will be governed by whether I have the energy today, not by whether it’s feasible!

I require a heated year-round pool. No quarter given on this one: I’m a water baby, even if I’m not actually swimming, and I’m not moving somewhere for the rest of my life that doesn’t have a pool. Not happening.

I tell the spouse that the next 5-10 years of our lives are the good ones – and if we are to do ANY traveling, it will be now. I want to see my mother and my extended family in Mexico, possibly at family reunions in Michigan. I want to go to the beach in the Riviera Maya or in places like Acapulco and Huatulco, which have warm ocean water in the winter. Because I know I can do these – at my extremely slow pace (once I cope with a week of packing and survive the week when we come back). I want to spend time doing a vacation with the kids while it still is fun for most of the family.

The solution? I’m working my tail off to find it

California has, at last count, 102 CCRCs (Continuing Care Retirement Communities) – places we can move to and get all those things above.

Some of them are unsuitable because they are retirement communities for particular religious groups we don’t belong to; others are urban and have no pool; still others are way too expensive for us (I’ve eliminated all the for-profits). Some would make it difficult for me to get to the gym or pool – my time being coherent is also limited, and the more energy I expend in getting, the less time I have for the activity; the independent cottages, ‘just a short walk away,’ seem, by definition, to require more health to get to the pool or gym – I believe an apartment in the same building as the facilities is my best option.

The CCRC concept is doing well. It is recommended you stick with places over 90% occupancy (proof of continuing fiscal responsibility), but when a place is 98% full, by definition there are few units left! People move on to assisted living or nursing home care (a CCRC by definition has both available to its residents when they need the next step), and some pass on, but the rates are not high, and I’d like to move fairly soon (once the pesky house is dejunked and sold).

It is a lot of research work and no one can do it for you. Not really. I have spent hours talking to nice sales and marketing people – only to hang up and realize there is no way we can afford their lovely CCRC. The main reason: they don’t put their prices on their websites (probably because then people won’t call and talk to the nice salespeople), but it is inefficient and wearying when you really do know how much you can afford and what you need, which most people on this search don’t yet. A tendency to put information such as ‘apartments start at…’ out for view means people think they might be able to swing it – and then can’t when the range of prices becomes known.

Don’t cry for me, Argentina

I’ll figure it out. We’ll pick 5-8 of these places, and then take ‘the trip’: stay in a few, see the physical plant, smell the nursing home portion (apparently, that’s the biggie – clean places take work and money), and have lunch with some residents in assisted living to see how they are really living – and being treated.

Then we will make a decision, hope the house-selling sill support that decision, and spend an enormous amount of my good time – and all of husband’s – actually doing this.

The average age of entrance used to be 80; it’s already dropping as people realize they can’t live worry-free if they have a house on their hands. Even with a lot of money and a lot of help, it’s a constant set of chores.

Think about this sooner, rather than later, if this kind of solution to our common problem appeals to you. Time goes by much faster than you expect.

Wish us luck (even if you would never consider leaving your home, or living with a bunch of strangers horrifies you).

 

 

Walking around in fear is stressful

IT IS NECESSARY TO CHOOSE TO DUMP STRESS

I’m walking around fearing sudden death, sudden incapacitation, and the need for more time-sucking procedures/tests/doctor visits/hospitals…

It’s too stressful to LIVE THIS WAY.

But after a certain number of life hits on the head with a 2 x 4, there comes a state close to ‘learned helplessness,’ where, if you’re not careful, you LET the stress have free rein – and, while you can’t change reality (whatever that is for you), you have forgotten that you CAN change your attitude.

It never stops, the stress from life

In addition to the medical stuff, which came unbidden and must be dealt with, willy nilly, I now have some dental stuff – and what the dentist thinks is necessary to do.

And I’ve accepted the job of ‘person who locates and chooses our permanent abode.’

Permanent, as in ‘where we – husband and I – will live the rest of our lives.’

The permanent solution to life

We are looking at the particular model of a Continuing Care Retirement Community (CCRC) for a bunch of reasons, the main one being that we want to spare our children (none of whom live close to us now) the ‘problem of mom and dad’ – basically, what to do with us when we’re no longer competent to manage our own affairs, and they have to step in and make decisions FOR us.

We have seen, first hand, how our parents dealt with this.

First hand – and at a distance.

And it is an interesting general problem which we’ve now seen proceed four different ways!

In Mexico City, my four lovely younger sisters have done the ‘huge extended family takes care of mom and dad’ – and are continuing to date with Mother. Done with love, it has still taken a huge amount of resources, and I have been in no position to help with much – I barely manage to visit every couple of years, and do the tiny bit of US paperwork (still incomplete) because my parents are both US citizens.

In the States, my lovely sister-in-law, who has always lived much closer to my in-laws, has undertaken the huge and complete burden much of the time, shepherding her parents as they wished and she could, and pushing for more permanent solutions when they had to be undertaken. By herself, with occasional help from her brother – as she requested it – she is still supervising all the care for my FIL.

We will have no child close, geographically, unless we move close to one of ours (and that child doesn’t move following professional opportunities, the thing that took them far away in the first place). We have no extended family in the States.

And I, with my disabilities, could provide little help to them, even if I lived close.

Making our own choices requires an enormous amount of work NOW

Evaluating places to move to, figuring out finances (husband is doing most of this part), comparing the amenities – and the long-term healthcare options – at each place has become my additional task, added to trying to write, learning to advertise – and the energy-sucking cardiac rehab exercise.

The additional task that comes when you decide you no longer want to be in charge of a suburban NJ house is selling it. Which require getting it ready for market. Which in turn requires fixing a number of ‘little’ things which, while they don’t affect the quality of living in a house all that much (such as a bump on the driveway from a tree root), WILL affect either the salability or the eventual sales price.

And the final task: dejunking a house we moved into in 1981 and reared three children in (and homeschooled them in).

Even with an assistant – whose time has been mainly spent lately helping the Master with the annual gardening tasks, not me with the dejunking – the decisions are mostly mine. And I don’t make decisions easily (that brain fog thing you have with CFS) or quickly, even with help.

There are twin mottos to keep me going: ‘If it doesn’t give you joy, out it goes,’ and ‘If it won’t fit in a two-bedroom smaller apartment, out it goes.’

Even then it is hard to make the decisions, and they must come out of my tiny daily supply of ‘good time’ – which is also my WRITING time.

Compartmentalization – and all the other tricks

The stress accumulates. I notice. I poke holes in it, take the time to do my de-stressing yoga-type breathing. Repeat.

Because there IS too much stress right now, even if the ultimate goal is much less stress.

To Do lists. Using a Scrivener Project for each of the tasks.

Doing the required things – I will not give up the cardiac rehab exercises, even if they are not yet providing anything much in the way of extra energy.

And letting go of the guilt, including the guilt that pops its head up because I can’t contribute what I should have been able to contribute to this household, had I not gotten sick all those years ago. A hardy perennial, that guilt.

And the guilt of actually spending that money we have carefully been not spending all these years, so we could take care of our needs in retirement.

And, almost daily, talking myself down from the ledge of ‘Woe is me!’

Writing suffers when the writer is stressed – normal

Blog posts have suffered, and will continue to, but, ironically, I need this outlet – because it de-stresses me to pin all this stuff to the ground in its little cages, where I let one problem child out at a time, on my better days.

The writing happens most days – though not as long. I have learned to accept that pinning something down on a timeline I haven’t looked at in two years WILL take that day’s energy – and is a GOOD use of that day’s writing time – because it MUST be done.

Most of these are from things I probably should have figured out long ago, but 15 years writing the first novel was already long enough!

I think there aren’t too many left, but have just dealt with a doozy.

And am very pleased with myself because it DID work out – and locked in, again, that odd feeling I have sometimes that I am a chronicler of an actual story. Good if you’re writing mainstream fiction with a long timeline, many characters (64 NAMED characters as of the last time I counted), covering locations in several different countries and states.

My solution to stress always includes writing it out

That’s how I make sense of the world, take the circling thoughts out of my head and acknowledge and record them, and eventually find ways to deal with them.

It is also part of my usual process to… I don’t want to say ‘cheer myself up,’ because that somehow implies putting a false face of happiness on top of the real problems. To talk back, to the stress, to the situational depression, to my feelings of inadequacy, to the long list of things I SHOULD have done and SHOULD be doing which get ignored.

Basically, the MORE dysfunctional I become, or allow myself to become before I notice that it’s gotten me again, the LESS I can do to change anything that’s causing the dysfunction, and so I have to get out of that state. And I’ve already proved – by trying – that I cannot accept chemical help and still get anything done.

So it’s my own resources, the written process after the thinking, and continuing to chip away at everything as long as God give me life and any ability to do.

And it’s a good time to prioritize (which I’m not doing as well as I need to).

MY motto is: “I’m working on it!”

Thought you’d like to know – and me to record – what ‘it’ is right now.

I’m working on it. You?

 

 

 

 

 

 

 

I have weeded for the last time

FEELING FOOLISH IS NO EXCUSE FOR TAKING RISKS

This may be a bit incoherent. I’ve had a rough week again.

As you grow older, there is an interesting concept of trying to identify when you do something for the last time, and whether that last doing is bittersweet. I have weeded possibly for the last time, because the personal cost was too high.

As someone who has so little functionality, these events have been coming at an accelerated rate.

I fight back. Try to continue doing things. Try to pick them up again when I haven’t been able to do them for a while.

During the spring, I weeded when my assistant was weeding, both to show her what was a weed (she’d never had a garden), and to do a bit of work that I used to love on my own garden. Several times I overdid it, and was stiff and sore for several days after.

Does weeding cause chest pain?

On Monday, with my brand new WORKING heart rate monitor, I did exercises up to the limits, which I hadn’t dared to do with an erratic old monitor.

On Tuesday, I spent maybe an hour outside, lying on a boogie board, pulling weeds, while husband and assistant pruned bushes. It was doable. I’m so proud of my ability to sit on the ground, and get up and down, that I overdo it. And it was nice to be out of the house. And not TOO warm, I thought.

On Wednesday afternoon of this week I asked myself:

Today’s contretemps was that I did exercise to a higher level (new HR monitor – this one actually works and displays continuously) on Monday, and weeding on Tuesday, and last night felt very odd, and have had the shakes, and a high BP, and a lot of (most probably muscular) pain, including in the chest area – because I was foolish enough to do my weeding while sitting/lying on a mat on the ground.

That may have been my last weeding, ever. Sigh. I love tending the garden, but I can’t afford the after effects.

Or it could be more of the other – and I’m fervently hoping it is not.

I may have to see someone and talk it all out – the hospital and stuff came back very vividly during this ‘episode’ – that’s what PTSD does.

I don’t mind the fuss IF there’s something wrong that needs caring for, but I really don’t want to go through it again unless strictly necessary, and I can’t tell. So the anxiety level is higher than I’d like, and I kept husband home from this morning’s bike ride with friends – and then spent the whole time asleep, because I didn’t get a good night’s sleep.

The perfect storm: adding small effects to get a scary one

Wednesday night, after a bunch of stuff, we went to the hospital.

Because the BP was increasing all evening. When it hits 200+/100+ I get nervous.

Because I felt unwell – shakes and chills (part of my normal temperature control problems, but were they at a higher level?).

Because I was out of it – not myself – not thinking clearly.

Because the stiffness across the front of the chest would not go away or yield to stretching. Not so much pain as incredible tightness.

Because, when I was weeding, it was much hotter out than it had been. I had a can of soda when I came in, but that’s all.

Because, apparently, I stopped drinking water, with the absurd idea that if they needed to do a test, not having water in my stomach would mean they could do it the same day instead of making me stay overnight (like last time).

You go to the hospital if you’re really worried it’s serious.

I should have known, when we went at 9PM, that something was wrong because I needed to use the bathroom as they were taking me to a room (after an ‘abnormal’ EKG) but nothing happened.

Of course, they don’t let you have water in the ER – and once you’re there, you do as they want you to do. So, as the time passed, I got more and more dehydrated.

I should have known when they said the veins on the back of my hands were standing out very well, and would be easy to draw blood from. But none of my veins, usually so cooperative, were easy Wednesday night.

When they gave me some water a bit later, I was able to produce a sample – but didn’t do a very good job of it.

I have learned this year to advocate for myself better

They came to tell me that they were admitting me. The older you get, the more risk factors you accumulate, and they want to be careful.

But they also told me both blood and urine showed that I had a massive infection, and they rolled in an IV bag of an antibiotic I’d never heard of.

I stopped them. I asked, since I had no UTI symptoms, whether it wouldn’t be better to wait until we were sure, and how long I would be okay postponing an antibiotic if I needed it, and they were willing to wait until after tests the next morning when I explained that I overreact to drugs and was worried about side effects. The nurse said the main one was diarrhea – but they could give me a probiotic for that. And seemed taken aback when I said that would be TWO new drugs for me, and I would rather wait until after the test. She said, “But it’s just a probiotic.” I explained they’ve made me sick before.

So I spent the predictable night in the hospital, disturbed every time I started getting some sleep, with a roommate who had a sister – they talked softly most of the night, but at least I was on a heart monitor, and someone was aware and available.

I asked how to stop the bed from automatically changing its setting every time I got slightly comfortable. I was told the only way was to unplug it – and lose all capability of adjusting it at all. I unplugged it. Horrible lumpy thing either way.

Once I realized I was dehydrated, I poured glass after glass of ice water down my throat. Made for a busy night, but it scared me that I could let myself get so dry and not even have an idea it was happening.

Vitals and blood tests through the night gave them data. The morning BP was normal!

I got the nurse to order another urine test, and made darn sure it was a clean sample. When they finally sent the results back, the evidence of bacterial infection was minimal. In this light, the extra white blood cells in my blood – the same on sequential tests – was labeled ‘mild’ and, since it was not increasing, deemed not worrisome.

So I let them keep their antibiotic, after worrying all night about having delayed the START of the antibiotic if I actually needed it.

My new favorite cardiologist

At half past ten, the cardiologist (another new one from the same practice) came to talk to me. He said the EKG was abnormal – but the same abnormal as my EKGs have been since the stents, so nothing to worry about. He said the monitoring all night long didn’t show any problems. He said the sequential tests for cardiac enzymes in the blood was negative after two tests, and that should be enough, given no other symptoms.

We discussed indications for coming to the hospital – and I got reassured that while high BP is bad, it takes days before it can do any major damage unless it stays very high continuously, and mine wasn’t in that region.

We discussed all the factors that made me go in – and basically concluded it was a perfect storm. He told me I was right to have come in.

I got bold – that advocacy I’m talking about – and handed him a copy of the paper on my family of stents which concludes that a month or two is as good as 12-18 months of antiplatelet drugs. He shrugged and said guidelines take a long time to catch up to research! I told him it seemed to bother my own doctor to be queried on these details – he thought my doctor must have had an off day.

I asked him if he knew my history – and he recited it back to me, correctly!

And he released me!

Subject to the rest of protocol, of course.

Which took until 4 PM.

An unexpected test – and refusing meds

When someone came in to do an echocardiogram, I asked who had ordered it and why it had been ordered, since the cardiologist had said I was free, not ‘free subject to X.’ The tech took her machine with her, and went to check it out as I did not recognize any of the names on the paperwork.

She never came back, and my nurse said it was some kind of mistake when she came to tell me she would be doing the paperwork. My nurse seemed annoyed about it, too.

I refused all the medicines the hospital had prepared for me: my own meds, but supplied by the hospital pharmacy, would be charged at huge rates. I stopped the whole procedure by telling the nurse I had already swallowed the morning ones (I had – forestalls arguments), and that the others I would take at home at the regular time with my dinner.

This also prevented the whole foofarah which would have arisen because my pain specialist has authorized brand name Celebrex because I tried four generics a year ago when they came out – and only one worked. Pharmacies that operate on bulk go by the lowest bidder, and cannot guarantee a manufacturer for generics.

I sympathize with hospitals trying to make their money in the current climate, but it is no reason to cooperate with unnecessary – and potentially damaging – things to me.

I’m fine – what did I learn?

I spent Thursday evening vegged out, Friday as a very slow recovery from all the assaults on everything (I joke I made my quota of people for the month in the first two hours in the ER – it is SO hard for me to cope with new people, new situations, noises, and bright lights). And Saturday I seem relatively okay, if slow.

I haven’t done any exercise yet. Possibly will do a shortened version of the cardiac rehab tomorrow or Monday, and ease back in.

And I have some new benchmarks. I know more kinds of chest pain that are just muscular. One doctor told me that if I could find the exact place where the muscle hurt, it was probably muscular, whereas if it seemed behind rather than in the muscle, to worry. A bit vague, but helpful. I know it’s only sustained high BP which puts me at risk for stroke. I was told only to take my BP in the mornings if asymptomatic. Duh.

I made the right call. After all the prior stuff – and the addition of all the above into SOMETHING, I didn’t have the right to put my husband through the stress. I even sent him home from the ER when they told me I’d be staying.

I managed to pack most of what I would need, quickly, in a small bag. Ate something with protein (I hadn’t been hungry all day), grabbed some Atkins low carb bars. (One ended up being dinner.)

Next time I will take salt and potassium in my own baggies, because food services and nurses simply do not believe me when I tell them I need to take a lot of both to keep my blood volume up, and by the time I see a doctor, it isn’t high on my priority list, and it is actually dangerous for me NOT to have them. The food they offered me was disgusting; I choked it down for the protein.

It took several days of my life away from me, put me through another bunch of stuff, and has left me behinder.

I hope there isn’t a ‘next time.’

Don’t take stupid chances.

Have you had similar ‘learning experiences?’


Thanks to Stencil for the image and ability to add words.

Writing poised under the Sword of Damocles

Pile of rocks on mountain. Text: What is ready to fall on your head? Alicia Butcher Ehrhardt

UNSTABLE ROCKS WILL CRUSH YOU

There are too many things going on in my life, and all of them critical.

But the thing that is making it hard to write right now is one I hadn’t expected: I can’t remember quite how I felt BS (BEFORE STENTS), when I ONLY had CFS.

And by ‘feel’ in this instance I mean sensations in the BODY.

What sensations am I having that are worrisome?

I’m writing about these because they are both common and keep happening.

I’m doing far more exercise (even in my pitiful little amounts) that I was doing before. Part of it has involved a rowing motion with my arms against a resistance, which uses the chest muscles (pectorals) in an unaccustomed way.

So it isn’t really surprising that these muscles have a spot or two where there is sensation. By which I DON’T necessarily mean pain. Just a tightness that is in the muscle, in places which vary but are repeatable. Over and above the left breast. Outer, center, inner – is what I call them. Once of them seems to be relieved by burping. There are one or two similar spots on the right side – but the right side is dominant, and the muscles may be more used to being used. So, less noticeable?

Are those spots connected to the stents? Or are they simply the same spots on the same muscles – because that doesn’t change. Are they INSIDE the ribcage? Or outside, in the overlying muscles. It’s hard to tell.

There is a slight shortness of breath – when I climb a bunch of steps in a row. Or walk a longer distance than usual unsupported, such as when I walk from the house to the car. Or walk across the lawn to the mailbox and back. The heart rate can go up noticeably – until I sit down and let myself relax. I should expect SOMETHING when I do that – when is it too much?

There are muscles in my upper arms which get a bit weird – sometimes one will make it impossible to sleep because it waits about 6 seconds, and gives me an electric shock – for very long times, until I get up and do some range of motion exercises and some stretches and maybe eat something, and sometimes take ibuprofen (I’m trying to minimize NSAIDs, so I resist).

The question: are these significant?

All of these things could be symptoms. Of clogging arteries. Of something about to happen again. Of something not quite right.

But the thing is that they are not up to the level of being ‘reportable’ – or, heaven forbid, calling the doctor about on a weekend, or going to the ER.

I feel I’m on permanent ‘symptom watch.’ I’m waiting for the symptoms to get worse before doing something, in the same way I should have done something when the shortness of breath happened BS.

They used to drive me crazy in the hospital asking me to rate my pain. For someone who lives with a fair level of constant other pain, it is difficult to choose the higher numbers on the scale, and I’m aware of both minimizing and exaggerating as possibilities.

So, not being able to say ‘this is significant,’ and instead being in ‘wait and watch’ mode continuously is stressful. And stress is bad.

It would help if I could remember which of these were life BS

Standing has been a problem for years, and causes pain. So is my exercise making that worse? Or is something more nefarious going on?

If I walked with the walker BS, I often had pain the next day – I’m supporting part of my body weight with those chest muscles and arms on the walker.

I did as much exercise as I could do prudently before – including a lot of isometrics, which involve clenching a muscle and holding it. I know there were times when I did more than usual, and really noticed it.

And I used to ride the bike, too. The next day I usually felt it.

But I had no reason before to make an accurate record of pains and locations – my modus operandi has always been to ignore most of this stuff as much as possible so as not to waste energy on what I couldn’t change anyway.

PTS anyone? Post-traumatic stress?

It’s one of the major symptoms, being hyperalert, and wondering and worrying about things which may or may not be triggers.

Always being on alert is more than exhausting.

Wondering exactly where on the continuum you’re supposed to do something wears you down. That and wondering if it’s new/real/important. Or ignorable.

So I’m sharing with my blog, and hoping that noticing and documenting feeling physical and mental is enough to disarm them – and that the PTS is slowly going away as I do so.

I really don’t want to have to find someone and take the energy to explain all this stuff to.

Thanks for listening, if you got this far. Share if it resonates.