Tag Archives: Life

Love in the time of pandemic

AND WHERE HAVE YOU BEEN?

Gak! It’s been almost a month since I posted anything!

There was a lot of quarantining in that time. NOT because we were exposed to Covid, though some independent living residents in this facility were (we found out because they had dinner with friends in Assisted Living at the Friendship Table, and the AL people ARE tested regularly because they’re in the health-care portion of our facility).

And because those people in IL who WERE exposed to the people in AL who tested positive, the State of California required them to quarantine for FOURTEEN DAYS in their apartments. None of the IL residents got Covid, thank goodness, but WE had a vacation in Lake Tahoe with our kids a few weeks later, and realized that WE wouldn’t be able to go IF we got exposed ourselves, here, and then had to do the same quarantine for 14 days.

That is, we quarantined for 14 days so we wouldn’t have to quarantine for 14 days – at an inconvenient time which would put the kibosh on OUR vacation. Mixed up world, eh?

So – any progress on publishing NETHERWORLD?

Well, yes and no.

For the ms., I created an easy ARC from Scrivener – the complete, very long pdf of the whole thing (~500 pages), and sent it to the first person who’s offered to review AND buy it on launch day (thank you, David!), and as a backup complete proofed file to several places, including my amazing beta reader (thank you, Rachel!), and gave my husband and children the necessary information to manage my literary estate (and publish Netherworld) if something happened on the trip/vacation/return. You never know.

The formatting is no further than that.

For the cover: I have all the pieces, an updated Pixelmator 3, and an updated Learn Pixelmator 3.5 video course (free update – thanks folks!).

I’ve bought licenses for the two cover images from Dreamstime, acquired another photo from the same friend who supplied the sky for Purgatory’s cover, found a couple of low-res images to guide me in the changes I’ll need to create the cover in my head, and put the whole thing into a folder and a backup on the iCloud. Phew.

Now I just have to do the work, get it past my cover mentor (thank you, Jessica!), and create ebook, paper and hardback covers to spec, and then, because I want to make one change to them, redo a bit of the Purgatory covers (bigger name so it shows on the thumbnail, add the award, etc.) which really amounts to redoing a fair amount of the Purgatory covers AND creating the hardcover one.

I have my permissions from Cambridge U. for my KJV quotations – feels nice and official.

I got my copyright certificate from the Library of Congress! I always feel better after I do that, for whatever it might be worth.

Launching is, of course, dependent on having something to launch. I had approached a PR firm, put up with a long delay to talk to them, checked in with them and received a promise of an answer of some kind before the end of May, and than have been ghosted. It does remind me that if people are not reliable in the small things, it’s probably better not to rely on them for the big ones, so that firm is permanently off the table. Too bad, because I liked them, and had already invested some effort into them.

I’m still obsessively re-reading the end of Netherworld – and not changing a word. I promise explosions, and I hope they are well received.

I want to continue getting into writing LIMBO

I literally can’t wait – because there are only a few hours between the end of 2 and the beginning of 3, and I’m very happy how that turned out.

And I’ve already started writing Chapter 41(LIMBO goes to 60).

BUT I’ve been dealing with some medical problems for 2.5 years to no solution, and I’m in the middle of trying to fix some things that really need fixing, and it’s a slow process because disability means EVERYTHING is so much harder – from making phone calls through phone systems that won’t just let you call someone to make an appointment, to doctor visits which consume an incredible amount of prep time, energy, and recovery time, to a whole slew of medical tests with the same problems – which the new doctor insists on before she will even consider DOING something.

Plus a big paperwork problem I’ve finally admitted I had to step in and manage, do some of, get help, hand over to the pros…

And my limited number of daily spoons is gone every day before I manage to write. Because it’s not just ‘write a few words’ now – it’s the whole huge Book 3 planning review, restart, clean up, carry stuff from 1 and 2 typical glorious mess of starting the final volume in a trilogy. Drives me up a tree that I can’t just do it.

But I’m literally doing the best I can

And not managing to sleep very well with all the above, to boot.

I can tell stress that I’m fine until I’m full-body blue, but that does NOT take away the stress. It just doesn’t add worry, but the things I’m having to do are stressful in and of themselves, and that is such a deep autonomic process that you can’t affect it much.

Plus the physical problems have extra pain and much discomfort associated, which has to be micromanaged – and I was already exhausted before that.

There are signs, portents, and possibilities

of improvements, but not fast.

This is literally the first time I’ve even been able to think of writing a simple blog post, in the whole past month.

Life happens – you deal.

I know what my primary aim is (if family is okay), but I’m not able to DO it right now.

Don’t worry. Nothing TOO horribly grim. But I’m all tapped out of spoons every day, almost the end of the morning, when I’ve done nothing yet.

But stuff slowly gets done, and goes into the rearview mirror queue from the To Do list, and I’ll get there.

On the bright side

my oldest daughter is helping me select my new computer for the foreseeable future – my current lovey is from 2015, and can’t be upgraded far enough because then my necessary old software – Office 2011 for Mac and Dramatica Story Expert – won’t work, and I don’t have the mental bandwidth right now to deal with another potential crash.

Everything is properly backed up (Time Machine and iCloud), but bobbles with computers cost me days or weeks when they happen, so for the first time in a long time, I’m being proactive: a new Macbook Air with the M2 processor and good camera should take me far into the future and definitely through LIMBO.

It will, however, require some learning – not my strong point.

So that’s the update:

I’m working as hard as I can on the critical list items

I’m as far along with Netherworld as I can be, including covers

Ditto redoing the Purgatory covers

Ditto writing into the future with Limbo

and dealing with the sorry carcass which makes all of this possible at all in as graceful a manner as I can against the extra stress of having to do it at all, and the unbelievable amount of extra energy it takes

AND, courtesy of my lovely assistant Sammy, whose last day is today (she’s graduating! going on to grad school! going home for the summer!), I have already acquired an assistant for the fall (another senior – so I’ll get 8-9 months of her life, and leave her a changed young woman – but seniors are really handy), and she’s interested in learning the self-pub aspects of the job I haven’t had time to do with Sammy because other things were more, uh, important.

And the ability to write this post reassures me that there’s still a ‘me’ here.

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More when there’s actually progress on this laundry list.

Be well. Have a great summer. Don’t work TOO hard.

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PS: If you are desperate to read NETHERWORLD, and wouldn’t mind writing a review to be posted when it’s published, email me (abehrhardt at gmail), make your case, and I’ll send you what I have at the time.

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May 12 is International ME/CFS Day

Millions of ME/CFS victims are missing from LIFE

Every year this date reminds me that we STILL have no diagnostic marker, treatment, or cure for the devastating disease that stole my life as a physicist in 1989, the week of Nov. 5th.

Another year with nothing really new that can turn me back into a functioning person.

Or even help new victims.

Except that this year there is an understanding that, if we didn’t know what virus had done the damage, ALMOST ALL of the long-covid victims would be diagnosed, based on symptoms, with ME.

But we know that virus, and possibly that will help some of the targeted research that now has been funded to figure out the mechanism of the damage and find a way to reverse some of it.

And maybe, MAYBE, some of that research will benefit newer victims of ME/CFS, and possibly – though the damage is so long-standing it’s hard to think how – those of us who have been waiting for decades.

If you pray, pray for us.

If you’re not the praying kind, think of us kindly.

We’re still sick – and I wouldn’t wish this illness on Putin.

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Meanwhile, Pride’s Children: PURGATORY is still in existence because of ME/CFS, and NETHERWORLD will be out very soon (the disease makes me very slow).

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Where have all the bloggers gone?

Inspired by Where have all the flowers gone? Popular folk song

WANTED: INTERESTING BLOG POSTS ABOUT LIFE AND WRITING

If you’re of a certain age, or ever went to Scout camp, you may already been humming along.

I’m having to sign up to follow and receive via email more and more blogs, because the bloggers I’ve been following for years are publishing fewer and fewer posts, and I need reading material to keep myself centered in the writer-support blogosphere I inhabit.

I write fewer posts because most of my posts have had something to do with the skills I acquired while learning to write – and I’m not actively working on those right now unless I find something I need to learn to get through a current scene.

Because I’m getting to the end of Netherworld – and know exactly where I’m going.

And there aren’t any tricky or new scenes – just the kind of wrapping up I’m hoping will put smiles on readers’ faces, followed by worried frowns about the implications!

I use writers’ blogs to stay up-to-date

I haven’t done marketing in a while (and it shows) because I have two brain cells, and one is needed for breathing, while the other takes an occasional turn at writing a few more words.

But one of these days someone will post something which will trigger something else, and I’ll be off and running.

There are lots of beginner ‘How to’ posts, fewer post on marketing, and almost none on marketing a very small output. At least not successfully.

So I take on new blogs

when I find one which has something a little less basic to say, or is in an area I probably won’t write – hoping to steal the genesis of an idea I can tweak into the book-selling campaign of the century.

I’d appreciate suggestions of blogs to follow, especially if you wouldn’t mind telling me what you like about them.

New platforms may be the problem

I don’t think I’m going to try Instagram or Tik Tok or Book Tok or even Twitter – mostly because I don’t think that’s where my kind of writer finds readers and followers.

Certainly not Youtube – not now! The competition must be fierce.

Trying a Patreon was a waste of time for me (this time) because you have to bring your own followers – and then generate extra material for them. The latter I like – I have lots of words about process and writing – but I don’t have yet the critical mass of followers, and, with very little energy, can’t afford to try.

But a lot of people ARE moving to the new platforms – the young ‘uns don’t use FB much any more.

Where are the readers?

To be more specific for me, where are the readers of mainstream/literary/contemporary fiction, but only those who are not hiding behind the wall of ‘I only read traditionally published and vetted fiction.’

And that, my dear readers, I have not solved yet.

But then I spend most of my time writing lately, and ultimately that will have to yield the answer.

So I try each new blog I find through blogs I already read or people who somehow find me, and participate for a while to see if we are a good fit. There are tens of thousands of my words out there contributing to these fun conversations.

Eventually we will reach critical mass, right?

I’d hate to think the indie experiment is doomed.

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Send me your recommended blogs.

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Don’t throw me under the bus

Davis, California – February 2022

THEY PROMISED US AN ENJOYABLE RETIREMENT

As working people, the ‘system’ promised us, if we worked hard and saved our pennies for retirement, didn’t spend it all, that we would enjoy some years of healthy living, ease, family, and freedom.

Now they want to renege.

The rest of the world wants to go back to ‘normal,’ ignore any public health measures that might prevent passing on a deadly virus which keeps mutating into something even more dire (so far), has killed oh, around a million Americans directly, and, if I’m reading the statistics right, another million or so in ‘excess deaths’ – deaths which wouldn’t have happened if normal ailments had been treated in hospitals in a timely manner.

Well, those hospitals were full of covid patients – still are.

And after every new peak, ‘they’ are quick to assume it’s the last of its kind (remember after Delta, and before Omicron cases started climbing stratospherically?), and give up restrictions before people get tired of them.

The view from the vulnerable block is pure astonishment

In the US and in much of Europe they are already preparing to ‘live with the virus’ – everyone will eventually get it, THE OLD, SICK, VULNERABLE, IMMUNOCOMPROMISED, FRAGILE WILL DIE, and the world will go back to being a lovely place for idiots to party and catch covid at a concert, restaurant, or bar.

And take it home to Grandma.

Who needs Grandma anyway?

People who might have lived for years, decades

Because what they had, while not fun, is manageable: diabetes, heart disease, obesity…

Or potentially curable: some forms of cancer, getting a replacement kidney or a part of someone’s liver or a heart transplant…

are incredibly susceptible to getting covid.

They don’t just fade away: death from covid is painful, exhausting, humiliating – and with little support from family and friends – lonely.

And people dying of covid in a hospital cause other people not to be able to lifesaving surgery or care – and die, too.

Let us get rid of one of these right up front:

Obesity. It’s an ugly word. It’s a word of our time. Before, the chubby of us had reserves for surviving – and potentially fighting off – some diseases, and lasted longer.

Be that as it may.

It is not something that someone can change quickly. Or at all.

Doctor-supervised diets have a 2% success rate after two years.

And it is a cop-out. Just because a doctor doesn’t like it, and blames everything on it, and says, “If you just lost weight and exercised, you wouldn’t be sick,” doesn’t make it so.

And back to the important qualification for being useless: there isn’t a person on this Earth who can lower their weight consistently and safely QUICKLY.

Another is exercise

For post-viral illnesses such as long-covid, ME/CFS, and possibly any others such as chronic Lyme disease, exercise is CONTRAINDICATED. Read that carefully. It means: “Doesn’t help and DOES harm.”

The exercise-and-it’s-all-in-your-head brigade have been thoroughly debunked, their statistics shown to be bad science, and guidelines are changing everywhere. Not fast enough – and with rearguard actions by the biopsychosocial cabal trying to claim their methods actually work (they don’t want to lose all that lovely research money, ‘treatment’ money, and prestige; and in some cases knighthoods or damehoods (sic?)).

New people with our diseases are needy and desperate. They will grasp at anything that offers hope, and they are not good at separating the quacks from the legitimate scientists. They are given something and told it works, and they try over and over, blaming themselves when non-proven methods actually DON’T work.

Worse than that: they make themselves sicker. For every post-exertional crash, the baseline lowers on what a person can safely do. Enough of those, with the very best intentions, and people end up bed-ridden or worse.

Exercise is dangerous for people recovering from these viruses. DANGEROUS.

Compassion fatigue

I always thought, when I was younger, that I would be able to work my way out of anything by just putting the effort in.

As an old person, I would keep walking, keep doing yoga, have the time for more exercise.

And that people who ‘let themselves go’ had brought it all on themselves. Well, some of them have. But I’ve been trying for over three decades and guess what? NOPE. You can’t work yourself out of CFS.

You DO stop going to doctors because they don’t like illnesses without a cookbook approach. They don’t like mysterious illnesses that somehow have normal bloodwork – for the tests the insurance companies will allow.

They don’t like taking into account one of my widely-shared symptoms: intolerance of medicines. We are the people who get all the side-effects of almost everything that works for ‘normal’ people. I actually went through four of the five classes of blood-pressure medications after getting stents (and both Plavix and Effient – which made me deadly ill). My last cardiologist in New Jersey said the fifth kind of BP drugs would most likely make me quite sick, so we skipped them.

The protection of the booster shots for the immunocompromised

should be extended to the elderly if it is warranted.

I’m in the vulnerable category – I got my fourth shot, considered the second booster shot, four days ago. My arm still hurts and a day after the shot during which I felt as if I had the flu was followed by two days of not getting much done because of being a bit woozy and brain-fogged, and I don’t care at all.

In a week and a half or so, I will have whatever immunity my body can build up from the shots, and I was the one who nagged my doctor’s office as soon as the CDC said people like me should have another booster.

We are back, cautiously, to congregant dining – but the husband and I are taking it very slow because I don’t want to get covid at all (I already have the equivalent of long covid; online friends who have had covid on top of ME/CFS are struggling). Everyone here wears masks, distances socially, and avoids as many group activities as possible – except for today, when we celebrated the lives of those fellow residents who left us this past year with a short ceremony and two songs – sung through my KN95 mask.

We are all wondering what will follow Omicron and its B version.

It will take a long time before people like me will feel safe – and seeing mask and other requirements vanishing left and right, when the scientists tell us it is NOT over, doesn’t help.

PLEASE continue to be careful and smart even when the official rules relax.

The life you save may be someone you love.

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I’m hoping my brain will be usable for writing fiction tomorrow.

Please pop over to prideschildren.com and follow if you are a fan of mainstream fiction of the ‘big book variety.’ There is a short story prequel there and a sample. PLUS the first scene of NETHERWORLD, and reports of how close it is to being published.

This post was composed while not completely with it – may be a bit ranty.

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Traveling with a nonstandard mobility device

An Airwheel S8 is a mobility device

THE BIGGEST ADVENTURE IN THREE YEARS

I haven’t posted for a while for a very important reason: traveling to the Boulder area for our son’s and daughter-in-law’s wedding reception. (I am recovering slowly from the trip, and am finding my writing very much more basic this week – bear with me.)

The wedding was a lovely Zoom event a year ago – it wasn’t deemed safe to have it in person before vaccines in the middle of a pandemic – and under Colorado law, the kids could do the actual wedding themselves by signing a form. They chose to do that, and did a wonderful job of vows with a backpacking theme – talking about how and why they packed the items for a trip.

This year, vaccinated and safer, the wedding reception took place in a venue with the Boulder mountains in the background, family and friends from all over present.

The ceremony was out on the grass in the setting sun – I made it to a seat somehow, and was misty-eyed at the very personal and heartfelt words. Big smiles by everyone. They make a great couple, and have been together a long time now.

So we had to get there

Our son had asked if I wanted a mother/son dance after his wife’s father/daughter dance and theirs as a couple, and I said yes.

I can’t stand very long, or walk very far, and am extremely awkward and unstable on my feet.

So of course I said yes – these things are important, and don’t happen very often.

If at all possible, you do them, because regret is the cost of not trying.

We didn’t have time or occasion to practice before, so it was a one-time event.

My secret weapon was Maggie

Maggie (for the magnesium alloy she’s made from, and the maglev motors that run her) is my Emotional Support Robot Mini Riding Horse – and my bionic legs – and my mobility device.

An Airwheel S8, she is a bicycle seat on a hoverboard. We are a proud member of a subgroup on the Electric Unicycle Forum (even though she has two wheels).

She can be used sitting or standing, lasts a long time and distance on one charge, and I use her around the retirement community inside (elevators and long carpeted halls) and outside (on the Davis greenway, sidewalks, and bike paths). I don’t stand – but the kids and others have tried that without problems.

The trick was getting Maggie there and back – on a plane

Without damage.

To Denver International Airport and back to Sacramento.

I follow John Morris’s Wheelchair Travel blog, and knew this wasn’t going to be simple.

Why? For a bunch of reasons:

  • Maggie is not a wheelchair nor a scooter, devices most people are more familiar with as mobility devices.
  • Maggie is electric.
  • Maggie has lithium batteries built in.
  • The batteries cannot be removed – the procedure for replacing one is long and involved.
  • Most devices travel in the cargo hold with the luggage, including my walker of many years, Sylvia.
  • Most people have never seen an Airwheel S8 (I am a ham; I do demos at the drop of a hat, and talk about my mobility device to anyone who evinces the most minor interest).

My greatest fear was showing up at the airport in Sacramento

and having a particular crew (the pilot’s word is final) or counter staff refuse to take her on the plane at all.

The next biggest were having my mobility device damaged during the trip, refused passage on the way back, or become lost baggage. My very sturdy walker has been affected by the many trips she’s been on, and the bracket I put on the front to hold a basket was broken off on a trip long ago. I breathe a sigh of relief every time the walker shows up again while deboarding.

If Maggie stops working (it has happened – this is my second Maggie), she becomes a 32 lb awkwardly shaped piece of metal and plastics that barely rolls.

There have been a number of incidents with cheap lithium batteries causing fires on planes and in other places, so I understand their concern – in principle. But electric wheelchairs travel all the time.

If absolutely necessary, I would have dragged myself all over the wedding venues with my walker. But what would happen to Maggie if I couldn’t take her with me was a big concern, because airports are not a place you can store things and time would be limited (as well as my energy, which is my constant battle to preserve).

Preparation before hand was key

I spent a lot of time a couple weeks prior to the trip (over an hour on the phone) talking to the person the Accessibility phone at the airline had at the other end. We sort of figure out that it would probably work. This person said a ‘note’ would be placed in my file for the trip.

A few days before the trip, I got anxious. I went to my reservation to see if the note said what it was supposed to say. There was no note. The only codes were the ones I had written into the form when buying the tickets – informing the airline that I needed a wheelchair in the airports, and that I can walk enough (hanging onto seatbacks) to get to my seat, so I wouldn’t require the on-board airline wheelchair to get to my seat.

Nothing about Maggie, nonstandard devices, batteries… all the things we discussed. Nothing I could mention to a gate person or counter person.

So I called again – and this time got someone who said she was Accessibility – and didn’t recognize the name of the other person! At the same phone number. Not a good start.

The second person was much more helpful for a specific reason: with a little searching, and knowing the airline website, she was able to find the specific wording which would let me take Maggie onboard, either in the wheelchair closet or in the cargo. I printed it all out, highlighted the relevant sections, and brought it with me.

I didn’t need to use it – but it could have gone the other way.

The airport trip was easier because I have an Assistant again

She was available to drive us and our luggage to the airport when we needed it. And she promised to bring Maggie home if something went wrong and my mobility device wasn’t allowed on the plane. Fortunately, I didn’t end up needing to call her back.

Sacramento was an easy airport to navigate: it was agreed I would use Maggie to get through TSA, and all the way to the gate, where the final decision cabin/cargo hold would be made – by the crew/pilot.

So far so good – and then, at the crowded gate (we were plenty early), the gate person told me the crew said there was no room on board for my device.

First big hurdle

The crew person who came out said there was no room. But I was allowed to go down the ramp to the plane on Maggie.

And at the door, I asked to be allowed to see the closet.

At this point I’m sort of holding up boarding (btw, disabled people are supposed to board before ANYONE, including First Class passengers, VIPs, people with small children – a right more honored in the breach than in the observance), so they let me on (I’m hanging onto anything I can at this point, with Maggie about to go down to the cargo hold), and I see that the only reason they won’t put here there is because it has a bunch of crew luggage.

So I state unaggressively but unambiguously that my wheelchair device has priority over crew luggage. I may have asked if they wanted to see the printout of their website written information; I don’t remember – the counter people didn’t want to see it either.

At that moment one of the pilots stepped out, and asked if he could help. I explained, said Maggie could be picked up with one hand. The flight attendant removed the luggage, the pilot placed Maggie easily in the closet, and the hurdle was over. I am very grateful – but still shaking – as I make my way to my seat, hanging on to seatbacks. My husband dealt with the carry-on luggage, sending the walker to the cargo hold, and putting our other stuff in the overhead bin.

After landing there was a wheelchair waiting for me, so I pushed Maggie in front of me through the very large airport, down to baggage claim (on a train!), the attendant got us to the door, our youngest daughter was waiting in the cell phone parking lot with the car, and the hotel room was actually there (you can bet I had called, prepared them for late arrival, and reminded them I needed an accessible room – but the ride was still spent with me worrying). I made sure to tip the wheelchair attendant very well – he was very helpful and stayed until we were in the car.

The wedding festivities went well

Except for me having zero energy, and being totally wiped out most of the time, everything in Boulder allowed me to participate as much as I could, because our youngest daughter rented a car and did the driving, all of it, and we fit.

At the actual reception venue (not designed at all for disabled people), I either used Maggie as a live cane (she is very stable that way, if a bit too short), or people carried her in for me and I grabbed whatever I could for support, and we managed.

The mother/son dance went incredibly well – I assayed a twirl at the very beginning, and it worked beautifully, so we did a bunch more, and it was really great to dance for the first time in years. I’m hoping someone has video!

The return trip was fraught

for a bunch of reasons, including Denver having a huge number of visitors leaving over the weekend (we were grateful our flight was on Monday).

We got there early. The counter help person took a snapshot, and texted the request for the on-board cabin to the gate. First step accomplished.

But when we navigated the busy airport and TSA and train with another wheelchair attendant, and got to the gate early – there was no one there, and the food venues didn’t have anything I could eat. I ate an Atkins bar, and prepared to wait.

When the gate person showed up, it was a repeat of the first boarding, with none of these people having seen my device (usual), or the form passengers are supposed to supply to go with their device to the hold (they said they had NEVER seen one – it’s on the website), and they started telling me the closet was too small.

Again, very unaggressively, I explained that Federal regulations require a certain size closet, and that Maggie was smaller than those dimensions. They came back with saying that there are many different aircraft, and not all have the closet (even if they have the number of seats that require the closet – 100), and that they didn’t think the closet door was wide enough.

It all felt as if they were trying to prepare me to be disappointed. At this point I’m completely wiped out by the trip, the wedding, the problems at the hotel (the only accessible feature I needed was a shower seat – and it turned out to be coming off the wall!), the physical and mental gymnastics required to be a disabled person in an able world.

Back to me

I managed to pretend to be positive. To do my little demo of how well Maggie serves me. To be polite and chatty with the gate person, the flight attendant who basically told me it probably wouldn’t happen but they were working on it and that the door was too narrow, and the pilot who came out and said all the same things, but that they were going to try.

This time I was allowed to be the first person down the ramp.

When I got there, I was prepared for failure, but of course the closet door was plenty wide (they have to be able to fit a passenger’s folded manual wheelchair into that space), the on-board aisle wheelchair was there, in the closet, and completely folded out of the way – and Maggie went in sideways through the door with space to spare.

I dragged myself to my seat, shaking again, and somehow survived the flight home, the wheelchair from the plane pushing Maggie in front of me, baggage claim, and was lucky enough to have the Lyft driver I arranged for as soon as we were at baggage claim and the suitcases were coming out arrive in three minutes, manage to load all out stuff, and get us home.

Feedback to the airline

Five days later I found the energy to fill out their survey.

I hate those things. They want you to check all kinds of points worded so only a horrible person would complain – but I put enough into the text boxes where allowed to give them a picture of what happened, to say everyone was very nice (they were – even when saying no a lot), and suggested that more on disabled passengers, wheelchairs, the on-board closet, and nonstandard devices should be done in training (knowing they all get periodic passes through it), and submitted. I doubt it will do any good, but you never know – I’ve done what I could.

My husband submitted his version – and he is a very supportive man, and didn’t step in and take over at any point (much appreciated) who knows exactly what I go through – he had some extra comments, again, very polite – and we’ve both done what we can with their awkward survey.

The future – I plan to travel more, and Maggie is an essential part

I hope this post gets shared (and I will ask John Morris if he wants a version for his site) because other people need to be prepared.

It was a constant obstacle course. Things are designed for able-bodied people. Any one of several hundred points on the track could have been the sticking point. Everything that eventually worked could have failed. I am grateful to have gotten there and back – and still exhausted.

Everything takes more energy and time when you are disabled – and you have far less energy than everyone else. Not fair, but it is what it is.

I saw no one else in their own wheelchair in either airport. That was surprising.

I’m sure the system is so daunting most physically disabled people just don’t try it most of the time. The mental strain is significant – and I can see how hard this would have been on someone less coherent than I was (and I was not doing well), or with other problems processing crowds, noise, and roadblocks.

I thought a wheelchair attendant was the key to getting through TSA efficiently (I cannot imagine what shape I would be in after standing in line – sitting on Maggie for any length of time is not great, especially if we aren’t moving), but it isn’t, and I think, after pushing Maggie, live, in front of me through corridors, trains, and elevators, it would be easier if I just rode her, while pushing the walker in front of me. But the attendant was critical in dealing with luggage, saved some of my energy, knew exactly where to go, and would have been helpful had anything gone wrong. Six of one, half a dozen of the other – and tip money very well spent. And an extra pair of hands is nothing to be sneezed at.

But most of all, I am incredibly grateful for those who

have fought all the previous battles:

  • Making sure there is an on-board closet
  • Making sure there is a wheelchair that fits in their aisle to get a passenger who can’t walk to their seat
  • Creating the Americans with Disabilities Act and its protections
  • Creating the Air Carrier Access Act (ACAA), [which] prohibits discrimination in airline service on the basis of disability – and all its protections
  • for other bloggers like John who write about the joys and perils
  • and who provide feedback constantly on how air travel meets or falls short of these ideals for every day travelers.

**********

Please excuse my lack of editing this down into something shorter and more pithy – I am still not recovered, and this feels below my standards in many ways, but if I don’t get it all down now, much will lose its immediacy.

Please feel free to pass this on.

Please contribute your own thoughts and experiences and suggestions.

**********

Stubborn opinionated determined author at work

You can’t guarantee the results

Isn’t ‘effort’ the same thing as ‘work?

After I wrote the above, I realized that I think of them separately (personal choice), with effort being the whole mental atmosphere surrounding what writers do – from paying attention to things other people never notice, including information on publicity, covers, and selling – and work being actually sitting down and turning that attitude into things such as a finished ad or a description that rocks or any number of other ‘deliverables.’

WORK‘, of course, includes the writing itself, the finished words on the page of a pdf you are about to upload to Amazon or others.

And know it’s the best version of the story you are able to provide that mysterious elusive creature, the Reader.

After that, Amazon takes over and supplies copies of the WORK to those who pay for it.

For many of us, Amazon is currently publisher and distributor, for a hefty portion of the rewards (30% for ebooks, more for print books). I am currently okay with that. Because that equation is far worse on the traditional publishing side, and many of the benefits to using them (editing, covers, advertising, promotion, reasonable advances, royalties) are on the path of the Dodo bird.

Writing successful fiction requires two additional things:

Finding your potential readers, and

Getting them to try your writing.

If you haven’t truly written a good book that readers would buy if they only knew about you, YOU’RE WASTING YOUR TIME when you promote and advertise and stand on your head to do PR. You may fool some of the people some of the time, but that is rarely a recipe for commercial success.

Indeed, after reading some authors’ latest ‘work’, I know I will never read another from them.

But the whole discoverability part of writing is hard, tricky, and requires the one thing I don’t have: energy and the capacity for endless self-promotion.

If you have written ‘a good book’ for a segment of the population

the satisfied readers should be clamoring for more.

If you have more (backlist), they have a lot to discover and enjoy.

If not, well, keep working. And some readers will never get that pleasure from you again, but it won’t be your fault, if you’ just keep truckin’.’

And hope for some luck, or ‘Here a miracle occurs,’ or going viral, or catching someone’s eye…

Some of us will simply have to hope for an afterlife, and wait to ask Margaret Mitchell what happened to Scarlett. Assuming she still cares – the afterlife runs on different rules, I believe.

And now I’m going off to nap, followed by keeping my nose to my particular grindstone.

I do so want to finish. It’s coming nicely. And every time the idea that life might be easier if I spent it entertaining myself instead of torturing myself with imaginary people, I have managed to fight that attitude off.

**********

What are the things in your life that you will never give up on?

**********

Won’t read your self-published book because

[WARNING: IF YOU ARE ALREADY PERFECTLY HAPPY WITH YOUR READING MATTER (or have already read PURGATORY and are waiting for the next volume in the trilogy), you may skip what follows with a clear conscience.]

I might find something I liked – and have to change my attitude about SPAs (self-published authors).

I prefer to wait until others decide what I should read.

I like classics – and classics were never produced by SPAs. Oh, wait. They used to be (long list of SPAs such as Benjamin Franklin and Samuel Clemens and…) but modern writers are not good unless they can submit and submit and maybe be granted an audience with an AGENT!

There is so much out there I could never figure out what to try.

I want the opinions of established critics, not my fellow readers. The critics have to know what they’re talking about, right? Because their descriptions and reviews are always exactly what I need to know, right?

I actually don’t want you to read my self-published novel(s)

Because I have some requirements of my READERS:

They have to love to read, even when it is difficult and they have to read in small pieces.

They have to love a lot of classics – because that what I educated myself by reading, and it has a habit of showing in my writing.

They have to love at least something out of the mainstream category

It shows openness of mind. Here’s a partial list of my favorites – and all of them influenced me and my writing in good ways:

Dune

The Moon is a Harsh Mistress

The Thorn Birds

Great Expectations

A Tale of Two Cities

Lucifer’s Hammer

Jane Eyre

Pride and Prejudice

Huckleberry Finn

Silas Marner

Dorothy Sayers’ Lord Peter Wimsey novels, especially Strong Poison, Gaudy Night, and Busman’s Honeymoon

Don Quixote and some of the Mexican picaresque novels (for Spanish speakers)

It helps if they loathe

Some of the books I found unsatisfactory because [reason in brackets]:

The Lovely Bones [that ending]

Lolita [subject matter]

The Great Gatsby [cannot get into it – don’t care about any of the characters]

A Confederacy of Dunces [after the first chapter I wanted to wash my brain out with soap – good writing in the service of that?]

Tess of the D’Urbervilles [they couldn’t find some excuse not to hang poor Tess? And yes, I know things were very different back then]

Anything by Dan Brown

Any number of shades of gray

And it really helps if you share some of my blind spots and prejudices

You don’t care for anything supernatural in your novels.

You prefer novels with characters you can identify with. And they can’t be improbably young, sexy, healthy as the only requirement. They should also have a job. And a life.

You don’t want anyone swooping down and saving anyone – salvation must be earned and isn’t assured.

You prefer not to have to ignore a lot of unbelievable plot points (really letting myself in for open season here).

Just because the author writes it isn’t enough justification.

Typos are not good.

Spelling is actually important.

You don’t read modern Romance novels.

You don’t like cozies, except if you categorize Agatha Christie as one.

Chick lit is too perky for you, except in small quantities.

When original authors died, their franchises went with them, and there are NO exceptions to this rule no matter how attractive you find Benedict Cumberbatch. Or Sandra Oh.

Why am I being this picky?

Because I’m looking for people who will actually LOVE the Pride’s Children trilogy, not just sort of like it.

Because I do not write for people who read outside my preferences – they are hard to persuade to try PC, and when they do, if they write a review at all, it is obvious they shouldn’t have tried it in the first place. I’m trying to save them some time. And annoyance (which explains their reaction).

Because people who love may recommend you to their friends, but people who don’t won’t – and book recommendations are the biggest way of finding your ideal readers.

Experience.

BTW, you can be a millenial or younger. That is not an impediment. Your taste palate for novels is the key, not the specifics.

I ALSO love the readers who are not my ‘Ideal Readers’ and love PC anyway. They are my heroes.

What about converts?

I admit to loving those. I have a number of reviews from older men who say, “I don’t normally read this kind of book, but I loved it,” and I treasure those above all others.

But they are very hard to find, it takes me a lot of careful and deliberate effort to get them to try PC, and it is time I should spend finishing the trilogy.

Surely in a world of SEVEN BILLION PEOPLE there are Readers already out there who are looking for specific things, already know what that is, and WILL RECOGNIZE IT WHEN THEY SEE IT.

Oxford commas and all.

**********

Please excuse my general grumpiness

The writing is going extremely well lately, and I may even finish NETHERWORLD this year, but my physical body is giving me a lot of… shall we say, distraction? And marketing can be a bitch.

Also, feel free to add to my canon in the comments. I will poach any I like and add them to the post, with credit to you.

If you’ve gotten this far without damage to your psyche, click on the book image (top right), read the descriptions and a couple of the reviews for yourself, click on the Look Inside! feature and read the first three scenes or so (you will have had enough to make your own decision by that point, and will have met the main characters for the trilogy). Make up your own mind. Go ahead, I’ll wait. I hope you’re one of us.

**********

Writer’s difficult decisions mirror human life

THE HARDEST PART OF WRITING…

is what you put your characters through, to tell your story.

Yes, this is what you created and delivered them for. They are your babies, but they were always meant for sorrow, because no good story avoids sorrow.

Writers of fiction are making a point: if I extract the relevant parts of human life, and clean them up so they are tidier and cleaner than the mess that can be real life, can I show that the story has a moral, something I’m trying to say?

There is so much to tell

that it is impossible to tell it all within the confines of the longest epic poem or novel series.

The clock starts counting seconds even before the birth, and doesn’t stop until reaching ‘The End.’

And still the writer, even the one who creates a world which encompasses the whole life of a character in one piece, must discard MOST of that life, and pick only a few high points, hoping to use those to tell you something.

Stories teach

So what will the writer choose to teach?

And what pieces of that character’s life will the writer use as salutary or insalubrious examples the Reader should consider following?

Not the boring parts, not necessarily the exciting parts.

But often the points where the character, a relative unknown to even the author at its conception, makes mistakes. BIG mistakes. Very BAD decisions.

And when we get to creating and writing those mistakes, we may suddenly find that we really wouldn’t have ever done this to our now-child if we had been thinking more clearly – because we love them, and this will HURT. A lot.

Not a bad place to be – as a parent or an author

Our writing choices are better if we care.

If we are going to hurt, damage, punish, instruct a character, it better be worth it.

To both of us.

But it is natural, first, for the author to flounder about, wondering if this torture can be bypassed, whether it is really necessary, whether we should be the ones to inflict the damage.

It’s a testament of a kind to Pride’s Children

that every single time I have hit this point, I have steeled myself, stuck to the original plan which came to me in one piece, ‘vouchsafed’ as I like to say only to me, and written through the pain (mine) and the sorrow (theirs) because that IS the story.

Characters become very real to you when you spend twenty years with them, which I will have spent sometime this year.

They also become more determined, and more pigheaded, more what you made them, more willing and able to carry the burden.

Like the actor chosen to play the villain, they have gotten enamored of their role, and are giving it everything they have.

They would be quite annoyed if the author watered down their part – which now belongs to them and is their chance to shine on stage.

I have enjoyed very much the preparation of Shakespearean actor Anthony Sher, which he writes about in The Year of the King, as he prepares for the role of King Lear. Whether the king is the true villain of the play or not, his decisions are momentous and affect the lives of all the other characters.

Actors live for such a role.

My characters are fictional, but…

Sure they are. I tell my brain that all the time. It doesn’t listen.

No real people are harmed by whatever I do to them.

Yup.

So why do I keep finding myself at this point, where I have to justify to myself what I am about to write them through?

Is it more that it exposes MY worldview?

There is some of that.

But I sat down with this feeling today and realized I get my worldview from the world, the one we all live in.

I’m not one of the experimental science fiction authors who create entire races of very different characters (Olivia Butler does a superb job of this).

I strive for such absolute realism in my writing, from ‘right behind the characters’ eyeballs,’ that you will feel this happened to you – until you close the book.

I want you to live another LIFE

I want you to think very hard about what you would do if faced with the kind of consequences that are determined by the behavior I’m espousing by showing you a character doing it.

And be glad, or maybe experience regret and longing, that they don’t actually happen – to YOU.

So this is my job.

And I go back to it with all my prejudices reinforced.

**********

Does love conquer all? With kids?

DO PARENTS OWE THEIR CHILDREN RELIGION?

The following is an exchange that occurred because of a short story posted on Wattpad, and a corresponding circumstance in Pride’s Children (though it may be years before you understand that last statement).

It is my own personal opinion, based on my observations of my family and the families of friends, meant as a conversation starter; usual commenting rules apply.

Where are the obstacles, by definition?

When a Muslim marries a Hindu, or a Christian a Jew, or even an atheist a religious person, it is often seen as the great triumph of tolerance over prejudice, and there are rainbows and falling stars.

When children come, this tolerance can take three nasty turns (not always, of course, but they are BUILT IN to the situation):

1) ‘allowing the other parent to choose the child’s religion’ suddenly becomes ‘bringing up MY child opposite to MY beliefs,’ or

2) bringing the children up as both (an impossibility), or

3) bringing up the children, of parents who were brought up with something, to be brought up with nothing.

Having one parent keep his or her hands off the religious education of the children, and ‘support’ the other’s efforts, doesn’t fool anyone: the kids know Daddy doesn’t believe what Mommy believes – kids are not stupid.

The final option – NOT having children – is a partial solution which must be strongly enforced for the whole duration of life by BOTH partners – a big leap when you’re 20 or 30.

Consequences of attraction.

Sadly,

giving the kids a vague idea of each parents’ beliefs and ‘letting them choose when they grow up,’

is the most common result, accompanied by the next generation not really having much of anything.

Love does NOT conquer all, not very long.

The situation often comes about because opposites are very attractive among people in the marriage marketplace, for a while. People fall in love before they think about the consequences, and the farthest thing from their mind may be adding small expensive bundles of work to a free-spirited relationship.

But the drive to procreate in your own image is powerful, or people wouldn’t spend time and money trying to conceive when Nature hasn’t made them co-fertile.

Solutions?

Think before you get married.

A LOT.

Spend a lot of time with your intended’s family – get to know each other’s actual beliefs – as distinct from the ones you are trying out in college or work.

Talk about these things – once you have that baby, it’s too late.

Have the guts not to go into a marriage hoping ‘things will all work out.’

Respect, love, and tolerance for other people’s beliefs is important in a society such as ours where many religions – and non-religious people – coexist, mostly peacefully.

The disappearance of religious beliefs and practices developed over thousands of years, which help us understand our place in the universe, and cope with the inevitable blows of life, shouldn’t happen by accident.

If you don’t believe – fine. Your choice. And religion has done plenty of damage when applied autocratically.

I just think we owe our children more than Oops!

**********

I’d never googled myself – just did

Ye olde PhD thesis.

APPARENTLY COMMENTS DON’T COUNT

And I say that because mine are ALL OVER THE INTERNET. With my name on them. You must have seen some.

Some of the places that turned up, some expected, others not:

http://www.spacefacts.de/bios/candidates/nasa9/english/ehrhardt_alicia.htm

https://www.bookdepository.com/publishers/Trilka-Press

http://booksandpals.blogspot.com/2017/11/review-prides-children-purgatory-by.html

Featured Writer on Wellness: Alicia Butcher Ehrhardt

https://www.trentonian.com/news/most-will-remember-where-they-were/article_50320d0b-2357-536a-a5f5-812fd5b08bfb.html

Alicia Butcher-Ehrhardt was descending the stairs of her Hamilton Square home, preparing to home-school her three children.

“I came downstairs, and my husband and two boys said, ‘No school today,'” Butcher-Ehrhardt said. “We watched it together as a family.”

Her 9-year-old daughter, Rebecca, was sitting with her father watching television when the attacks occurred.

“I sort of understood what was going on,” she said. “I was scared, and, I don’t know, it felt weird.”

She said that she’s feeling a little better now, but she’s “still uncomfortable with what happened.”

Her mom isn’t surprised.

“It’s the end of an era,” Butcher-Ehrhardt said. “It will be a huge change in the way my children have to grow up. They normally feel safe. This will make a big dent.”

The writer’s Kindergarten: cut and paste

WHEN STUCK I GO BACK TO BASICS

And I’m writing this post now for two reasons:

  1. I just had to go through this – again – and other writers might need the same trick
  2. When I woke up this morning and reached for something on my desk, I disturbed the page I used (photo above), scattered all the little pieces of paper, and realized I don’t need to keep them around forever, even if they did rescue me.

I’m an extreme plotter by nature and by practice and by brain damage.

Things have to be organized so I know what goes in each scene, because I can only work with the content of ONE scene at a time (and yes, if you’re wondering, I have used this trick on paragraphs, beats, and scenes as well, when my brain refused to do the organizing internally).

When I got to the current piece in the middle of the WIP, I realized that, inexplicably when I stared at it, the next scene was NOT ready for my ‘process.’

I came to a standstill

For several days.

Abortive attempts to write the next scene failed to make that scene gel, despite having a title and the usual nubs I use to attach words.

Since I was worrying about politics, and in the middle of getting vaccinated for the coronavirus, it took me a while to track down the reason: when I was doing the Great Reorganization of 2007 (GR07), I had had the same reluctance, created something that sort of worked at the time (a list of scenes covering what would happen in this part of the story), and decided to DEAL WITH IT LATER.

Unusual for me, but I was trying to get to the end of GR07, we had half the way to go, and I only had a few more days of the concentrated time I had been saving for the reorganization.

I believe in football American style they cause it punting.

In 2007 I moved on

Never thinking that it would be 2021 when I got to this point in the writing.

I was young(er). Naive(er).

Trying desperately to take that original rough (very rough) first draft of the whole story to the next level – which required the complete reorganization AND a committed devotion to upping the quality of my writing (no, you are never going to see that draft).

and it worked

I moved on. GR07 became the reality.

By dint of work, the writing problems got solved one by one.

Pride’s Children PURGATORY was written and published in 2015 (yeah, I’m slow), and I immediately moved on to NETHERWORLD.

I believe they call it a poison pill

Maybe not so bad.

But a buried little landmine all the same.

Because there was a reason. I know it now and I knew it then: this piece was going to be very hard to write.

And, as is usual with such, incredibly important.

I couldn’t handle it in 2000, when the story came to me.

I couldn’t handle it in 2007, except to realize there was no way around it, and I would have to deal with it during the writing of the second book (nameless at that point).

And I couldn’t handle it at first when it got to be late 2020 and I hit the red flag marking the mine.

I couldn’t even have written this post.

You can’t skimp on the hard parts when you write

The hard parts are WHY you, and not someone else, is telling this story.

The hard parts are where your writing should shine, and, given enough work and time, where they will.

If your story doesn’t have hard parts well executed in it, it’s not going to be the best book you can write.

Because you shirked.

I don’t shirk.

I kick and scream and complain and try to find ways around the roadblock and hope some insight will just remove it.

And then I admit it needs the work, and I do it.

On this one I had to go back to Kindergarten

Yup. Basics. Writing things on single lines. And cutting the sheet into real-life strips of paper.

And rearranging those strips, edited as necessary (in pencil), into the RIGHT order, with the right words, plus any surrounding fill text, until the whole emerged.

Somehow.

That’s the level I have to go back to when things get really bolloxed up for whatever reason.

Eventually, it works, and I find it all amusing. Sometimes I blog about it.

But you’d think that by now I’d be out of Kindergarten, wouldn’t you?

**********

The slow approach of some kind of normalcy

Davis greenway on my trike ride, winter 2021

LIFE HAS TO GO ON

It is starting at the opposite end of society: those vaccinated most urgently are the older people, who otherwise have an appalling death toll from Covid-19 if they get sick.

The fear has been very real among those of us with co-morbidities, who in normal times could look forward to a bit of retirement and the presence of children and grandchildren at the end of a life of labor.

This community went from people who had dinner with other people in a catered dining room several times a week to an entire building of people whose food was delivered in takeout containers every day. For almost a year so far. We have accumulated (and tried to recycle) countless containers, with the dining services having trouble, it seems, buying the same container shapes every day.

There is only so creative one can get with plastic takeout boxes.

Why the light at the end of the tunnel?

Because, if all goes well, most of us – of around the 250 people in Independent Living in one main building, 15 cottages, and 16 ‘garden apartments,’ will receive the second dose of the Moderna vaccine this Thursday, and two weeks later will achieve the maximum protection that can offer us.

We’re not sure yet what will change once there are a bunch of us in that state: the precautions will still be in place, a few people won’t have been vaccinated (including some staff – I don’t understand why they are not jumping on the chance to be protected), and the fear that ANY encounter with another human being might end up being terminal will be muted a bit while we wait for the rest of the world to catch up.

A reversal – normally vaccinations are for the young, and we elders have a lifetime of toughness to protect us.

Anyone who was alive for the 1918 flu is now over 100 years old.

I’m writing now because the suspense is at its maximum

None of us want to be the ironic case of the last old person to get Covid-19 and die from it – that won’t happen for a while but it’s worth pondering.

So those of us who believe in vaccines and modern medicine, however imperfect, are being very careful for the next three weeks or so.

I have a doctor’s appointment in March, and it will be the first time I’ve gone off campus feeling safe in over a year.

I desperately need new glasses – but have refused to make optional medical appointments with people who will be close to my face and body while their breathe could be my end.

Ditto dentists – you won’t believe how carefully I have been brushing my teeth so as to avoid any unnecessary visits (and have eschewed the necessary cleanings) for this year: I don’t want someone, even someone masked, gowned, and with a face shield, that near to me.

I have some experience, having caught the flu in 2018 from the only time I’d been out of the house in months, but decided to accompany the husband to his eye-doctor appointment: someone left a flu virus in that waiting room for me.

So the stress level is still high

And we look askance at the crew of men painting our halls and installing new carpets (first upgrade in 20 years) – and going home to their families every night. They need the work, the facility needs the facelift, but we don’t need all those people we’ve never seen before (thanks, guys!) wandering our halls.

This last Friday was the first time testing of all the staff revealed no new cases in quite a few weeks. It may be just random luck.

Or it may be that the staff have already had their two shots + two week wait, and are now as safe as they can be. I hope so, for their sake. They are very nice people. And there are almost as many of them as there are residents (we have higher levels of care in the same building, which increases our staff requirements). 200 or so.

(Still don’t understand why any of them would refuse the vaccine against a deadly disease they could transmit to the older people they work for.)

The public stress changed

From worrying about the election and the devoutly-wished disappearance of the previous mob, to wondering how the current administration is going to manage to reverse so much damage.

But I no longer watch – it’s politics as usual, the grownups are in charge, and I can’t do a thing.

The grownups are at the helm of the current actual focus on getting control of the pandemic. Another place I have limited reach and scope.

Since I’ve blocked all the people who are science-deniers, my only remaining advocacy point is to remind them that THE DISEASE IS MUCH WORSE THAN THE VACCINE.

A few have legitimate concerns; most should just make sure their doctors know their problems, and they are watched for a time after the actual injection to have a quick response if they have the exceedingly rare anaphylactic reaction. EXCEEDINGLY RARE.

But I’m so tired

Months and more months of stress have taken a real toll on the writing (and the other parts of my life, which I try to ignore).

I have only just regained some semblance of a normal sleep schedule with melatonin in tiny amounts at bedtime and my Daylight therapy box in the morning as soon as I get up. Now I’m wondering when I can get off the regimen, because the melatonin always makes me a bit groggy, and that is the enemy of me writing fiction.

A couple of weeks of better sleep is not enough for a year of stress, but I’m getting there.

The work proceeds apace

Yesterday I managed to take all the notes I had accumulated in 2016 on the critical medical topic which is an intricate and ineradicable part of this section of NETHERWORLD’s plot, and make sense of them: they were very badly written in the original source – and that is now behind a paywall!

So I’m feeling proud of myself for documenting everything so well that I was able to figure out what I needed, from what I gathered over four years ago in another state!

When I do research, I carefully retain the link or other source information, in the great fear that I will forget where I found something and fail to attribute it correctly, so my paranoia has served me well.

And some form of exercise occurs occasionally

I got a trike ride, a short one, this weekend – because the outdoor pool has glass in it from a broken table top during last week’s windstorm, and is unusable, even in the mild weather we had (they still haven’t told us how the heck they’re going to clean it up, they who put glass-topped tables near the pool in the first place!).

And I get out of the apartment to pick up lunch or somesuch on Maggie, my MAGnesium Alloy Airwheel S8 (a bicycle seat on a hoverboard – google it) a couple of times a week. Not nearly enough exercise for anyone, even disabled and chronically ill, but all I can manage.

The great outdoors in California in the wintertime is still great.

So that’s the report from a Continuing Care Retirement Community (CCRC) for today

I can feel, on re-reading my words, that the stress is lower.

How goes it with you?

If you are offered the vaccine, and don’t plan to take it, I’m curious how your thinking is going. I promise to be civil.

And otherwise, along with MY children, I hope everyone will be protected by a vaccine as soon as possible – I’m tired of living like this.

Not tired enough NOT to continue to take every precaution, but you know what I mean.

**********

I don’t have to supervise Biden

Photo of the Madrone courtyard at the University Retirement Community showing flowers, the building in the background, and picnic tables
Madrone Courtyard

THIS IS WHY I HAVEN’T BLOGGED

No, not the picture. That is just a photo of part of our lovely campus at the University Retirement Community.

If it’s warm enough, this is where we have our ‘younger women (<= 75)’ First Wednesday lunch every month, a way for the youngest members of URC to meet each other and connect. Since people move here at all ages, it isn’t the newcomers, per se.

But one of our residents decided to start this group, and it has been nice to have lunch with my contemporaries, some of whom have just moved here.

Most people at URC are older than we are.

Which brings me to my first topic: the coronavirus and the vaccine.

Because we live in a community where most residents, from independent living to skilled nursing, are over 75, when it came time for Yolo County to offer residents in Independent Living the coronavirus vaccine, they decided to include those of us under 75, but living here, the vaccine at the same time they vaccinated older residents and offered the vaccine to the whole staff.

We found out and signed up, along with most of the residents, a few days ago.

So, on Jan. 7, the day after the Capitol riots in DC (more about that later), husband and I got the first shot of the Moderna vaccine. We had very minor side effects, and I got an odd one (but so did others): a slightly red, slightly itchy upper arm around the injection site – but over a week after the shot! It went away before I reported it, only lasting a couple of days, but that was unexpected. Which is why I mention it.

We are scheduled for the second shot Feb. 4, four weeks after the first, and, if all goes as expected (management reassured us yesterday, but that means nothing as they have no official notice, no vaccine on hand, and no control – BUT have not been informed of any problems), two weeks after that, or from about Feb. 18, 2021, we will be as protected as this vaccine can make us.

Almost a year since we went into virtual hibernation, we may be able to move about in the world. No one knows how long it will be before our kids qualify – they are late 20s, early 30s – so this place will be more like a bubble or relative safety, and we may be able to socialize more with our peers. But it’s a big first step.

The stress has been hard to take, especially since some people don’t seem capable of keeping their mask over their nose.

The said Jan. 6, 2021 Capitol riots in OUR capital city

Along with most people, we watched horror as the day when a simple procedural count of electoral votes, certified already by each state, were supposed to simply be read into the record!

Now that 45 has been gone, and Joe Biden and Kamala Harris have pledged to uphold the US Constitution (as their predecessor promised, and then failed to do), it is hard to remember the enormous stress it has been to watch and read about the waning days of a wannabe dictator who attempted to reverse a legal election, and tried to get his sycophants to keep him in power via an attempted coup.

It will be a long time before that is all sorted out, but the days from Jan. 6 through Jan. 20, 2021, will not easily be forgotten, as the authorities slowly regained control over a situation that never should have been allowed to happen, and scared the heck out of the rest of us in the process.

The stress, predictably, made it difficult to write fiction – and made it impossible to blog. Anything I wrote might have been proved false within minutes.

I couldn’t.

I couldn’t make myself find some relatively stable and harmless topic, and I couldn’t write about what I was seeing and reading second hand.

Too volatile.

A real rollercoaster ride of ‘this has never happened in my lifetime.’ And my lifetime has included the Cold War, the Vietnam War, the assassination of President John F. Kennedy, and the moon landings.

I’ll slowly recover – because of the title of this post.

The grownups are back in charge of the country.

Not that I could do anything about anything while they were not, except express outrage on FB, forward liberal posts there, and end up blocking or unfriending people who used hate language.

But, like many of us, I could not take my eyes off the trainwreck, even if I managed to limit it to a quick look several times a day into the headlines, and watching the coronavirus death toll.

Biden and Harris have, as the cliche goes, ‘their work cut out for them.’

I think that means that now they have to sew it into something resembling a garment. Or a shroud.

The sympathy for the victims and their families that was not expressed in the past year was given attention before the grownups even took office, in front of the Lincoln Memorial.

The choices for people in charge have, some of them been a bit surprising, but I don’t have a reservation about the selections that I know anything about. If Ben Carson, who doesn’t seem to care about anything, could head HHS, the Biden appointees can learn whatever they need to learn, and at least are people of integrity – and not all white men, by a huge margin over 45’s.

Nothing will be perfect, and not soon.

As there is incredible damage to stem, and then reverse, it won’t be fast.

I want accountability. Silly me. I hope we get some.

But even then, I leave that to the politicians, to the grownups.

I can’t help, and my opinions are not based on knowing enough to offer solutions.

I will sign petitions, such as the one to provide more funding for ME/CFS research, which, had it been done in a timely manner over the last four decades, would have been ready to help the long-covid survivors who end up with a raging post-viral syndrome.

I will vote, and urge people to take seriously both voter registration and voter intimidation before the midterm elections.

I HAVE NO FEAR OF VOTERS.

But removing post boxes so people can’t vote by mail, removing polling sites so they have to wait in line at the few remaining ones for HOURS, and the rampant intimidation of AMERICANS by domestic terrorists so they dare not cast their votes, is WRONG, makes any elections ‘won’ that way illegitimate, and is a nightmare to leave our children.

Anyone scared of legitimate votes is a FASCIST. There seem to be a lot of them.

We have a long way to go on so many fronts that were made so much worse by 45 and his minions.

But I don’t feel I have to be aware of every action any more: legitimate authorities will tackle the problems one by one.

I never was in charge, but now I’m getting out of the fray as much as possible.

I have NETHERWORLD to finish THIS YEAR. If God gives me life and brain.

*****

How have you been affected?

Will you now be able to move on?

*****


Major stress doesn’t just END neatly

A peaceful setting on the greenway, mother with stroller and child

GETTING BACK TO NORMAL?

Outside stress

I told myself that when the Electoral College did their thing, the stress about who the next president will be would lessen.

It did.

But not enough.

There’s a pandemic going on.

I had hoped the arrival of vaccines would help, and it did – until I realized that even though we’re over 70, and living in a care facility, those of us in Independent Living will not qualify for the vaccine for quite a long time. Staff will be ALL vaccinated first – not a bad thing, as they are the ones who DAILY go back into the community.

People in Assisted Living, Memory Support, and Skilled Nursing will be vaccinated.

We will not. Not at first.

And it will be a VERY long time before I don’t have to worry about my children (late 20s, early 30s), because they will be among the last vaccinated, which means their quarantines (and ours) will not end for many months.

Medically-induced stress

I told myself that when I found a new doctor, completing the process of picking one more deliberately than how we found our first Primary Care Physician (PCP) when we moved here over two years ago, and met him or her, and things seemed more to my liking (the first physician was fine, but we are not, it turns out, on quite the same page philosophically as I had hoped), that I could relax.

It did – I had a wonderful first visit yesterday during which all we did was talk, and at the end. I had asked the nurse, ‘Could we do this at the end?’ when I got there, and she agreed with no hesitation (good sign), because I was so stressed about having done that horrible thing, CHANGING YOUR DOCTOR), so that when she took my blood pressure, it was fine (Note to self: make sure I send a note to the cardiologist).

It would have been lower, I’m convinced, if I didn’t have to fight so hard to have the American Heart Association (AHA) guidelines for accurate BP measurement followed.

I get it: they’re busy, and they have to process people through quickly. For most people it doesn’t matter much if the nurse talks to them continuously through the process, they’ve exercised (getting to the doctor’s office DOES constitute exercise) within the past half hour, or they’ve not been allowed to rest quietly – or any of the other guidelines.

But for those of us for whom going to the doctor brings up a whole host of issues, stress significantly raises the measurement taken under not ideal conditions – and that is the number that goes into your permanent medical record.

So that particular medical stress has been lowered – but is not gone. And the contortions I had to go through in my mind and in person left me completely exhausted and unable to write a word yesterday. I couldn’t even nap!

And, of course, my medical system still doesn’t have someone with expertise in ME/CFS I can talk to – I continue to be completely responsible for whatever self-care measures I can find and execute to deal with what, for convenience and so readers can understand because it’s FRESH, is exactly like what the Covid-19 long-haulers are discovering: no one knows enough to help them get themselves back after a virus, and for some it’s been almost a year.

Removing the stress isn’t a panacea

In many ways, it dumps you back into the situation you lived in before the stress started, but at a significantly lowered coping level.

There’s the long-neglected to do list.

There are the problems with money, which for some are an annoyance, but are a major new source of stress for those getting unexpected bills, do not have the expected income, or are even worried whether their investments will be ravaged by the stock market rollercoaster – and they will have to depend on their children to pay the bills because their nest egg will not get them through!

I won’t be able to relax completely about the election until Biden is IN the White House, either – too much nonsense has gone on.

There have been some new health challenges – notably the blood sugar rollercoaster (much better, thank you) – which consumed lots of time and caused much worry. The kind that RAISES blood pressure (yup, all stress reinforces other stress).

I don’t know how to get back to – or to – ‘normal.’

Nobody does.

My resilience has been challenged by 31 years of chronic illness.

And we’re still in lockdown, not particularly conductive to relaxing, abetted by the news that California’s screwed up bigtime. If you look at all the graphs, it is likely much of the soaring covid and covid death rates were NOT helped by Thanksgiving, and we’re about to repeat that with the year-end holidays.

We take it day by day.

But it’s been incredibly hard to write. To create NEW fiction. To find a time during the day when the brain is functional (not just in survival mode) so I can use it.

And ignore the guilt that comes from not using some of that ‘good brain time’ to do things that really should be done, and which I’ve been planning to do in the evenings AFTER writing – something that just keeps not happening.

Be kind to yourself

And everyone else.

Be especially kind to those who have been working because they have to – we have an amazing staff here, but they are human, are working under plague conditions, and have had to live with weekly testing, knowing some of their colleagues have tested positive, and that a mistake on their part might severely damage one of the old people in their care.

And don’t expect to get back to normal easily or quickly.

Because we don’t.

Stress stays there, like a phantom limb, even when it’s technically reduced or gone.

**********

Nothing stays resolved long enough to write

I KEEP STARTING POSTS THAT GO NOWHERE

My apologies for being lost – missing in non-action.

Every time I start settling into a topic something happens.

Often it makes what I was going to write pointless.

The pandemic is a rollercoaster

Over 250,000 dead – and we’re pretending it’s not happening, led from the top?

Over 11,000,000 cases – and that’s only ones that are caught and tallied?

We’re heading into the winter flu season – conditions will be ripe for passing on ALL kinds of viruses and germs – so the numbers that are already horrifying me are going to get much, much worse.

And people (!?!) are still planning to get together for Thanksgiving in the USA after the reports from the Canadian Thanksgiving which showed surges from people getting together and spending time in interior spaces without masks.

Do we really have to repeat or exceed the 50,000,000 worldwide deaths from the 1918 flu?

It’s bad enough that we’re repeating the behavior from 1918.

Oh, and they’re starting to talk of triage in hospitals, and letting the weak and old and disabled and ill die first again. People like me.

Election results are a rollercoaster

I don’t even want to go there.

I avoid even the reputable news sources closer to neutral and accurate reporting because they are telling us everything, because we need to be able to find out, but I can’t take it any more.

It took me forever to figure out the ‘Opinion’ pieces on The Washington Post are only that, someone’s opinion.

They aren’t news or truth or even remotely accurate just because other part of the newpaper are supposed to be unbiased reporting.

Their headlines sit there and jangle me.

Every previous (well, in my memory – since about 1969 when I moved to the States) ex-president or failing candidate conceded, called and congratulated the winner of the election, and made plans – for the good of the nation. Power alternated between parties, and legislatures were not necessarily of the same party.

And it will be months of this wrangling, while we hold our breath and the departing administration tries to lock in its failures or perceived gains, instead of moving on.

The lockdown at our little CCRC is a rollercoaster

We have lost and gained and lost again:

  • the outdoor pool
  • the indoor pool
  • the gym
  • meetings of a certain size
  • dining in the dining room with friends
  • use of public rooms, the arts room, and the various lounges
  • singing

and every other resident activity that makes living in this kind of retirement community a pleasure.

Some have returned via TV or zoom; others will have to wait.

And people still have not mastered the simple requirement of wearing a mask that covers NOSE AND MOUTH, ALL the time, and not handling things like the microphone.

We have had relatively few cases – but we have had some, and we go in fear that something will change or get worse.

My personal life is a rollercoaster

Some of it is probably stress, and continued stress, and never really being able to relax from stress.

My pain meds – which I always used to toss down the hatch with some water without thinking much about it – have been giving me major trouble. I think it’s finally become impossible for me to take them on an empty stomach (I would often remember to take the night ones right before bed).

With all the time I have, I can’t count on myself to be functional, and it seems to take huge amounts of attention to find myself with a couple of hours during which I can focus. I hope that gets better.

But we’re heading into WINTER, and I know I am highly affected by the shortening of the days. It is worse because I am already a night owl, insomnia seems to be part of the package, and, if I go to bed at 6am, and sleep until 11 or 12, and then need an afternoon nap or two, I have precious few hours exposed to daylight.

I should be arranging for a couple of surgeries, one relatively minor (but nothing is minor when you’re a slow healer), one significant – and I don’t want to go anywhere near a hospital right now.

There is some POSSIBILITY that research into post-covid long-haulers MIGHT deliver some results for those of us with ME/CFS – but nothing much has appeared yet, and it’s a long-odds hope. More likely: the new sick people with symptoms like mine will overwhelm the available medical systems – which have nothing to offer them because they’ve never developed it for people like me.

All that is hard to manage on a day to day basis

And I can’t plan, and I can’t count on myself, and I can’t see my kids, and I can’t help anyone.

But I am managing to write a few words when I’m not oscillating like a tuning fork.

And after 31 years, I at least have the ability to know that if it’s a while yet, I’ll survive, and not go completely off the rails because of ‘pandemic fatigue.’

And that is why I haven’t blogged much.

I’ll get there. We’ll all get there, those of us who survive, but it’s a rollercoaster.

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