Seems such an obvious statement, but being invisible is a big problem for authors – getting the title of your book out there is a constant pressure, and you become very fond of those who make the effort on your blog, their blog, a writing site, a reading site, or any place where readers who would like YOUR books congregate.
And then something has to persuade them to read enough words to get to a ‘Call to Action,’ which can be as simple as a recommendation followed by a link.
The problem of recommendations
If the subject of what you’re reading comes up naturally, I don’t find it too difficult to ask a few questions about what someone new to me likes to read.
I rattle off a couple of favorites of mine – say Jane Eyre and the Dorothy L. Sayers mysteries and maybe Dune – and watch to see if the listener’s reaction is fight or flight.
No one likes pushy authors, those who insist their books are ‘for everyone.’ Because it’s not a very believable statement in general, though people who are glad they read Jane Eyre have the most flexible mindset (which is why it gets so much attention). The enjoyment, or even that the story was self-chosen, are the keys – such a reader probably plowed (or ploughed) through similar long-lasting books.
I tried reading A Confederacy of Dunces – an award winner with a good author story (John Kennedy Toole committed suicide when he couldn’t find a publisher, his mother persuaded a legendary literary agent to champion the book, and it won the Pulitzer Prize), but had to force myself to finish Chapter 1. Because it may be brilliant, but it made my gorge rise and choke me. ‘Icky’ is the best I can remember about that long-ago attempt I have no desire to repeat. I don’t get very far into Lolita, either, for similar reasons. Or The Catcher in the Rye.
I can’t imagine their authors spending time with those characters, however good the writing may be.
So I wouldn’t recommend it to anyone, and am glad I don’t have to assign either book to, say, a class of high school juniors (assuming teachers still get to make those choices), and then have to talk about it in class.
It’s personal for the author
And books can become a personal crusade favorite for readers who then recommend, gift, or lend something they loved.
So, if you LIKED a book, take a moment and do SOMETHING to encourage the author to keep it up:
Rate the book
Review and rate it
Blog about it
Recommend it to a friend
Leave nice words on the author’s websites
Buy an extra copy to lend
Send a copy to a friend or family member
Use as gifts
Ask your library to order the book(s)
Write a guide
Mention your favorite parts
Tell people you can’t wait for the next book in the trilogy
Hire a band to parade in DC in costume
Anything you would like if YOU had written the book.
Be your most creative.
Give a copy to any medical personnel who have no empathy for diseases like ME/CFS – this will allow them to live the life of one – without actually having to get it, or Long Covid, or Post-polio Syndrome, or Lyme disease – or any one of a bunch of post-viral syndromes and similar misunderstood ‘invisible’ diseases.
Crusade for indie books in principle by doing something a little beyond your normal response – the author will be delighted.
It’s not the money (though adequate royalties of around $6 per any version I have are about three times larger than many traditional authors make per book) – I crave the readers. Thanks!
Not intending to be dire or apocalyptic – but often being able to write a blog post, almost any kind of a post, signals, for me, the end of a difficult period where the brain power needed to do almost anything is just not there, and I’m not sure if it’s the waxing and waning of ME/CFS – or the beginning of the end of being able to write.
Those who know me, or have been following for a while, know how close to the edge of completely non-functional I live. A little bit worse, and no creative juices flow at all.
I wait it out, deal with whatever is causing additional problems beyond chronic illness and disability, pick up where I left off when I can function a bit again.
THERE IS NO POINT
in wasting any of my energy in railing against my fate – it doesn’t help, and doesn’t make me feel better. [Note: my brain supplied ‘railing’ as the appropriate form of protest against things bigger than I can manage. I was terrified for a few seconds when Google only supplied ‘fencing’ as a definition, until I insisted further and ‘rail’ as a verb came up. Phew!]
It is what it is until they figure it out, this ME/CFS, come up with a definitive diagnostic, find the mechanism(s) that cause it, find a treatment, find a CURE!
Today I had an interesting interaction with someone online who claims 1) to have had it, and 2) to have a treatment protocol that cured him. I had the strength of character to tell him I was glad for him, and not interested in arguing with someone online who has the ‘solution of the week.’ And to please stop writing to me.
As we tell new people, “Hope it’s something else – something that DOES have a diagnostic and a treatment.” If something actually cured someone, it is awfully likely they didn’t have what I have in the first place, but something with similar symptoms – and a CURE!/treatment/prognosis.
It’s vanishingly likely that he has something that can help, and I don’t have the bandwidth for another savior with a solution. I’ve been at this nonsense for 32 years.
There is a finite (ie, non-zero) possibility that now that they’re pouring money into long covid research that they will actually look enough to find a real solution. That’s where my hopes are being pinned; ask me in a couple of years if anything panned out – because governments finally realized that 10-30% of the long covid survivors were, essentially, getting ME/CFS and, more importantly to governments, turning from productive working tax-paying citizens into sick citizens needing the disability benefits they have been promised since they started working. Ie, it will COST the governments, and they may figure out a cure is finally worth putting some money into research, instead of telling people it’s all in their heads.
Hope I’m still around.
More than that, hope it works for people who are not recently ill – not that I begrudge the newbies, but I want to be at the head of the line.
Hey! Look! I’m producing coherent (okay, you may argue about that) sentences!
It’s been a rough time since I announced I had finished writing Netherworld, and now that I have finished proofing the text.
The plan was to format and then to get the cover out of my head and onto a page. It’s been weeks. Sometimes I just go read the end, fall in love with it all over again, and go back to sitting staring at the screen.
Because love hasn’t been translating into action.
So far it’s just par for the course, and I expect it will resolve itself, and it won’t hurt to get the new Airbook(name?) from Apple with the M2 thingamabob my eldest daughter says is good – not having the computer question resolved – should I format and cover on the old machine, or wait for the new one and bite the bullet and update my Scrivener which may have some of the things I needed that the previous version didn’t have?
But I can’t believe how much that tiny obstacle in my path stopped me from making ANY progress.
Physical problems have been the stumbling block
I don’t want to go into details, yet, on a public blog, but my already-strained-to-the-limit body and mind have had a huge task added to keeping us all going, it has affected sleep, pain, and comfort to an incredible degree, and taken every speck of energy I had.
Finding a solution took energy I didn’t have, and going outside my medical system, and I’m glad I did – but it won’t be over for a while, and it isn’t going to be any fun. Until AFTER September, and then there will be recovery.
And I won’t have any relief from taking care of the problem constantly unless I am very, very, VERY lucky next week.
I’m sleeping in 1-2 hour chunks. That should account for the feeling of doom – sleep deprivation is classified as torture.
So I shouldn’t worry, right?
Except that there’s always that one last straw, the one that breaks the badger’s back, and I wonder, when I have the brain to wonder, whether this is it, and hope it isn’t, because I’m not finished writing quite yet.
If I am, it isn’t because I quit. I was because I was wrestled to a standstill by Reality, which always wins.
Meanwhile, putting words on page has given me a little much-needed hope again, and getting the news my computer situation might be resolving has given me a goal in a decision I kept going back and forth on (wait – or go ahead on familiar if not completely adequate technology – wait -…).
Thinking outside the box hasn’t worked yet
but I am vastly encouraged by the fact that I figured out how to, initiated it, was fortunate enough to find a listening ear (after several tries), and it may work much better than what I have had (nothing). And in my weakened state, no less!
I’m very proud of myself for trying – hope it works out.
So there – and mysterious. The women who read this blog and are older than 50 and/or have had children may have a clue; the rest of you really shouldn’t want to know. It’s grotty and embarrassing and against all the modesty my middle-class Mexican upbringing instilled deep, courtesy of my beloved Mother.
If I navigate it successfully, you may ask privately, and I’ll name the Beast.
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As soon as the fog clears a bit more, and/or the new laptop is here and mastered, I will go doggedly right back to working on the publishing of NETHERWORLD, instead of just going to the file, re-reading the end, and crying into my beer because I love it so much.
I’m just waiting for two good friends to let me know if they liked it, too, to feel a whole lot better.
And if you like to be in at that stage, my contact information is in the About. I could use a few more readers/reviewers who are familiar with PURGATORY, and need to keep going.
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.
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).
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.
When you are reaching the end of writing a novel, it looks as if you’ll never finish.
Encouragement comes in odd places:
a reader wanting to know when the next one is out
sales you didn’t expect, didn’t advertise for
the writing going particularly well
a tough section written
and a review that blows your metaphorical socks off (one gets so jaded).
This morning, my inbox contained a link to that kind of review, and I encourage those who are here for the fiction to take a quick look at the books’ sister site, Pride’s Children . com, and sign up there if they haven’t – because NETHERWORLD will be here early next year, and that encouragement keeps me focused.
An encouraged and supported writer (thanks to all my visitors and commenters and fellow bloggers and friends from FB and GR – you know who you are, and I hope you know how important you are) is a happy writer, and is probably writing much better than a discouraged one.
I don’t buy the drugs-and-alcohol motivated writer narrative (one reason being because my body doesn’t process alcohol fast enough and I don’t tolerate most meds), so I have to go on HAPPINESS, the universal salve.
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Sleep and lowered stress would be nice, too, and research to treat and cure this dratted disease (ME/CFS). I’m doing the best that I can.
I had a surgeon, the other day, refuse to do a minor procedure – WITHOUT EVEN MEETING ME – after talking to the nurse practitioner who examined me, because their ‘guidelines’ stated another procedure HAD TO BE DONE FIRST to rule something out.
Now before anyone gets all worried, it is a minor procedure which would improve my life significantly.
I didn’t say no – I asked for statistics.
Was told they had guidelines.
It is my very real experience in previous cases that ‘guidelines’ are often years out of date, because, as one doctor told me, “It takes time for the research to be incorporated into the guidelines.” Lots of time. A decade and a half in the previous case.
But even that is a red herring
I don’t know what the statistics are in this case, but I’m guessing MOST of the ruling-out procedures are unnecessary. As in, don’t discover anything that needs being attended to in the majority of cases.
In the case of normal reasonably-healthy people, going through a ruling-out procedure is a minor inconvenience, the loss of a day or two of their time, and an allowable use of their medical leave (if they’re working).
FOR DISABLED PEOPLE WITH NO ENERGY, EVERY procedure
carries risks and an amazingly high load of days lost and physical inconvenience, minor and major misery, time, calling in of favors, arranging…
You name it.
And it is very reasonable to 1) ask if something is STRICTLY necessary, and 2) supported by research and statistics which show the procedure is worth the enormous effort it costs that disabled person.
If a restaurant meal is $50 for one person, and $50,000 for another, it is reasonable to ask first whether the second person wishes to pay that much (this is what prices on menus are for, among other things).
Not taking that into account in medical procedures is the equivalent of saying, “If you have to ask, you can’t afford it.”
The ADA requires that health care entities provide full and equal access for people with disabilities.
This can be done through:
Reasonable Modifications of Policies, Practices, and Procedures. Adjusting policies, practices, and procedures, if needed, to provide goods, services, facilities, privileges, advantages, or accommodations.
At the end of the fact sheet there is a feedback form. Where it asks Is the information useful to you? I checked NO.
Where asked How could the usefulness be improved? I answered:
“Reasonable modifications (or changes) to policies, practices, and procedures” does not address RECOMMENDED procedures used to RULE OUT a possibility, when it isn’t a strict requirement, would be much more difficult for the disabled person to satisfy than for a normal healthy person, and is not wanted by the disabled patient – who understands but does not consent to the recommended procedure, and is thus prevented from having a service they DO need and want.
Where asked What are the most important changes we could make? I answered:
Directly address the fact that, for disabled people, things can be MUCH more difficult to do because of the disability itself (which in my case includes very little energy in a day), and it is not fair to insist they meet the same RECOMMENDED but not STRICTLY NECESSARY requirements an able person is presented with.
And where asked What other factsheets do you think we should write? I answered:
How to lower the barriers which prevent a disabled person from getting a necessary service/procedure when these barriers are ONEROUS to a disabled person compared with an able person.
Do I expect any help from the ADA people?
Not really.
The wheels of government move slowly in the best of cases, and there will be pushback and talk about ‘lowering standards’ and interfering with ‘recommendations by doctors and medical societies.’
And, more ominously, ‘disabled people not knowing what is good for them.’
Change would likely take longer than it does to update those guidelines they are so fond of, produced by a medical society, 15 years after the research changes, to CYA those who might be sued if they don’t follow ‘standard procedures.’
I’m pretty sure they were not thinking about the EFFECT of the above on a disabled person with limited capacity – just imagining what it would be like for a person like themselves (rarely disabled) to go through the procedure, say, with an emotional support miniature horse (yes, they are specifically included, but might be excluded if not housebroken).
I’m furious because there is no recourse
This is the only version of the medical procedure I need within my medical services system.
It takes me a lot of energy to even write about it here; the actual recommended but not in my estimation strictly necessary pre-requisite to the procedure I need is one that would take over a week of ALL my time and energy to do – and I’m not sure I could manage its requirements anyway.
Finding an alternate to their clinic is beyond my capabilities.
The minor procedure would improve my life immediately but isn’t going to happen.
And I don’t think I’m going to get anywhere with the ‘feedback request’ from my medical providers – thought I may just send them this post.
As the disabled person
I should not have to fight over things like this, but should be asked my preference without having to go through the stress of fighting the surgeon who hasn’t even met me.
I have wasted enough time and energy on this already.
I hope I can continue to manage the problem.
And I wonder exactly what they think ‘informed consent‘ means when I do NOT consent.
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And, if you’re worried, I’m not taking stupid chances – I’m not planning on dying of something preventable.
Why do disabled people have to fight so hard for stupidities like this?
But the last flooring was installed, the staging ladies have done their thing, and our real estate agent is now our real estate agent (all the advice up front doesn’t count until you sign on the dotted line – at which point all kinds of things start happening, like open houses and a lock box on your front door…).
We haven’t recovered from the trip.
We have no place for our stuff – the stuff we need to function as inhabitants of a house (where is my skillet, and how will I make eggs when the gas isn’t reconnected yet?). Which may be a problem, as the period between when you put a house ‘on the market,’ and the time when you are removing your last belongings so you can hand over the keys, is an unknown variable.
I don’t know where anything is
It happens to everyone, but it is especially hard to deal with when you have ME/CFS and daily brain fog: and now it’s far worse because some of the stuff in this house was put away by someone other than me, in a hurry, and without labeling either the box or the corresponding card in my card file. Or worse still, labeled as ‘miscellaneous.’ Aargh!
I located a few of the critical items in very odd places. Not sure I have everything I need, as distinct from the comforts, even yet.
And the dryer vent, taped by the painter, is loose – so I’m not sure I can do laundry (I’m living with the absolute minimum amount of clothes out).
Everything is to be kept tidy
And by ‘tidy’ we mean the way the staging ladies left it (a model home look), or restorable to that condition on short warning, when someone uses the system to ‘book an appointment.’ Aargh!
Meanwhile, we do have to be allowed to eat. Other Half and his good friend are down there trying to reconnect, safely, the gas to the stove.
But the forever home may be available soon
Don’t know exactly when, as they actually have to get everything they asked us for, and decide whether they want us. It is possible for them to reject us.
And it is possible for us to be legally required to leave our ex-home because it belongs to someone else after all these years, before we have a place to land.
It’s a first-world type problem – and I’m not whining – except complicated by my limitations. Residence Inn America for two months? We probably could survive. Rent or buy an RV? Ditto. I think.
So we’re adjusting.
Again.
And I’m marveling that I’m still standing – and taking a nap every chance I get so that I can be coherent for the next crisis event. Such as talking to the people at our brokerage (Vanguard) and being able to satisfy them that I’m me, so we could transfer money. By phone. Since the money has actually been received at the other end by the right people, I did it.
A bit nerve-wracking: you will be asked a series of questions, based on (?) publicly available information, and if you miss one, you’ll have to go the long route of being identified some other way. I’m still chuckling over one question about a boat we owned. And wondering where husband hid it all these years.
I love Vanguard. They get things done, and always have alternatives. I am currently furious at one of our banks for the way they made a decision (which led to the nerve-wracking phone ID). And at the other for the fraught way they handle wire transfers, as if you were a criminal actively trying to circumvent laws. Why is it that the people the laws are intended to protect always feel the brunt, while the people who should be caught and punished never even feel a thing? Being law-abiding is becoming more difficult every day.
There is a For Sale sign on my yard. After 37 years.
Life is interesting, but I’m finding the watershed point was signing those papers, and I’m strangely free.
That and the deposit wire-transfer going through on the same day is… unexpected.
There is an oddness to the idea of pineapples in the wild that pleases me.
The modern pineapple is a huge, heavy fruit, supported by a strong stalk. Much like modern melons, watermelons, and papayas, it is hard to believe (okay, impossible) that they are the way we see in the supermarket solely due to evolution.
Evolution produces fruit which attracts animals that eat the fruit and scatter the plants’ seeds, with their poop (fertilizer) somewhat farther away than the plant can throw. In our case, the pineapple, continents away. Shop Rite has pineapples.
Why pineapples, and why now?
Because I have to get back to writing blog posts.
It has been a desert for a while, as all the chores crowded in to vacation and retirement community decision and coming back to a house where everything was in boxes (for the painters) and the staging ladies had transformed the now-sparse contents into a model home.
So many things that HAVE to be done crowded out the optional ones.
The lack of window shades on most windows makes it like living in a fish bowl, only fish are not required to clean their own bowl. It’s nice if they do (by eating the algae, etc.), but that’s asking for perfection. Husband has done marvels with something I didn’t even know existed: temporary paper shades from Amazon which get cut to the right width with scissors, and attached with temporary mounts.
Sleeping has been possible, at least in our bedroom.
Where did THIS pineapple come from?
Stencil – I was looking for an image to write some words on, and the pineapple grabbed me, since I know I saw a picture the kids took on a hike with a wild pineapple growing in a fields (might have been a former Dole plantation).
Today is the first day in a while that something major and required didn’t take over all the energy for the day, but I have gotten out of the habit of putting my thoughts into some kind of order, and I’ve been a total slug all day.
And now we come to the single part.
I check my emails several times a day. Just habit. And hoping there might be an interesting thing to read, or a tidbit of a conversation setting itself up. And one not purely utilitarian and needing an answer, like the email from the woman at the solar company who needs my monthly input to get me the solar energy credits (SRECS) from our installation.
With me ignoring my blogs, and all, I am reduced to input (you don’t get much if you’re not writing) from two people today who saved my brain from the mush: a patron on my Patreon who commented on the new scene available there (the finished scene from Book 2 that I’m serializing). A very favorite patron.
And one of a kind I hadn’t seen in a while: a reader on Wattpad who commented, and is reading the beginning of Pride’s Children which remains there as a sample, as allowed by Amazon’s KDP for books in KU.
With limited promotion for either of these sites, I don’t often get comments. But getting one – from someone discovering my writing for the first time – was a kick in the seat of the pants as to how much I need feedback.
Single project authors can get lost.
Forever.
Stories of authors saved by someone else: John Kennedy Toole, A Confederacy of Dunces, (whose mom insisted on getting his manuscript accepted for publication after he committed suicide in despair – and won the Pulitzer – posthumously). Austin Tappan Wright, Islandia (whose wife typed up his 2400 page manuscript after he died). Even Stephen King, whose wife rescued Carrie from the circular file.
How many more are there out there who spent years, decades on their creations (Tolkien) AND (the more important part) created something of great value?
Rescued by a single act of feedback from a reader?
Computers, word processing software, and the internet now make it possible for writers to create works which are massive and available to many – if the many only look.
As in everything, I fear the great majority of the epics are not great fiction (wouldn’t know, haven’t read them) simply because of Sturgeon’s Law: statistically, they can’t be. But those many projects include a few good ones for some reader somewhere.
Readers keep us writers working. It’s that simple.
Unless the writer has many other sources of support as a writer, the projects can seem hobbies, dilettantism, something to do that is not video games or watching TV.
I thank today’s two readers. It had gotten a bit parched. I’m still here. I love readers.
Must get moving both on writing – and promotion – to find more. I am not unhappy to admit I need them. Even if I claim to write for myself.
We came here for the kids, and it has been a great gift to see our three plus one significant other – for meals, for pool time, for watching Moana last night with them all in a pile like puppies.
But you can probably figure out it isn’t as easy as I would like!
There is a lot of walking (for me).
There is seeing middle son spend seven hours biking up, and then down, 10,000 ft., using enough energy in one day to fuel me for a year.
There is me being unable to walk as far as the ocean – so I haven’t been in it. They say it is warmer than the pools – which have been ‘heated,’ but consistently too cool. And the hot tubs, except for one, late at night, too hot to stay in for very long, with an annoying sign that says the elderly shouldn’t use them! Bollocks to that.
Hawaii apparently doesn’t have all-inclusive resorts, so fooding has been more complicated, and the five of them (four plus husband) have had to go shopping several times.
Why am I complaining?
Because I’m pretty useless for most of the tasks. My chef offspring have been feeding me – we still respect the matriarch enough to keep her around.
But it is mildly annoying.
And I realize how marginal I am when it comes to taking care of myself in a strange place, I who used to take care of three little ones in strange places, more or less (I’ve had ME/CFS since before the third one – who is now the designated driver on the rental car!).
It galls a bit.
I don’t care.
It is wonderful to see their bonds still intact, and strengthened by the pleasure of being together, my far-flung kiddies. This is one of my prime concerns – so many people don’t know their own adult siblings all that well any more.
I had a lovely talk with a woman from Chicago; she said the idea – get together once a year with everyone for a vacation (not an original idea) – was brilliant. I told her SOMEONE has to initiate it – or it won’t happen.
Some families have a beach house of a cabin somewhere – that probably works, but I’ve heard stories of very uncomfortable accommodations, especially as little ones come along. I think using a resort is better.
The other part is making the three of them pick the dates – so they have to work together before – and the place. That way it isn’t foisted on them by Mom and Dad.
I suggested that it NOT be around the holidays – then they’ll be able to go to their in-laws for Christmas – when travel is expensive and complicated.
They picked May. It would have been perfect had we not been right in the middle of putting the house on the market, but even that has had its good side: the painter has repainted our interior while we are not there!
So hello from Maui
And we’re leaving tomorrow. I did note it took me until this morning to wake up feeling adjusted to the time zone.
Oh, well.
Just look at the picture: it’s gorgeous here.
Reminder: royalties and page reads for Pride’s Children (above right) in May being donated to #MEAction for advocacy for us ME/CFS types – sorely needed. Thanks for all who have participated.
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.
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):
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.
I am represented by my shoes. Thanks to the people who take the shoes, label them, place them where people stop and look and ask: my shoes represent one of the #MillionsMissing. Me.
I am represented by my fiction. Specifically, ALL my royalties for May 2018 will go to support #MEAction‘s fundraiser – because they are being activists for all of us who have ME/CFS and need medical recognition, research, and training. I’m not delusional, trust me. I’m just sick. Lots of us are. You can ignore us – and make us even more miserable than we already are. But you can’t make us go away and not be sick, and, like AIDS patients before us, we are holding you accountable for this misery – because those wo do nothing when they could are enablers of the misery.
I am represented by my blogs. This one, and Pride’s Children’s blog – where there is a new post! About me learning to use a new marketing book which may help me find the people who will read and love and be waiting for the next book in the trilogy (coming – as fast as I possibly can – this year, or next at the latest). A curious thing (to me) has been a whole bunch of people signing up to follow it and liking the posts – without ever going to that site. I suspect the word ‘marketing’ kicked some bots into gear, but traffic is traffic. It’s difficult for me to market when the people who have left 5* reviews range from young women in their 20s to older men in their 80s. I’m greedy. I want more of you.
I am represented by my Patreon, where at least one lovely patron and I are having very interesting discussions – and the patrons get to read Pride’s Children: NETHERWORLD before anyone else. Curious? Drop by and read the free public posts – and ask yourself if you can REALLY wait another year…
I’m represented by my Facebook page, which is for RL friends and family, and a few extras (it’s not all that exciting, though I have boosted a few posts).
But I’m not represented by me. 😦 Because, as happened today, the spoons went to something silly and necessary that jumped to the top of the To Do list right during one of my four naps, and had to be done that minute. Today’s energy, and tomorrow’s, are used up already. And Sunday, I already know I won’t be able to go sing – there is nothing in the energy bank to allow me to do what I want to do. And I know perfectly well I’ll make myself much worse if I foolishly try. No problem – I can do it, go sing – but the cost will be days of staring at the wall, and I can’t afford them.
Thanks to all who are doing something and going to an event for May 12, ME/CFS Awareness Day – again, since we’re still not getting anywhere, and not only are we still sick, but new ones join us every day. I’ll be there in spirit. Spirits are invisible.
I have acquired a new job: living in a house with white carpets.
We made one of the two choices offered:
Sell the house after cleaning it up and fixing the obvious and/or necessary problems, or
Update the house as much as possible before putting it on the market.
The easy choice: sell more or less as is
Clean things up.
Touch up all the paint – I still have the cans of good quality Benjamin Moore paint in the basement, and a card file with a paint sample for each, and a list of which rooms are painted/trimmed in that color.
Have the carpets cleaned.
Dejunk.
Add a credit to the house price for new flooring to be chosen by the new owners to their taste – and which it would be so much simpler to have installed when the house is empty between us leaving and them moving in.
Put on market.
Live in your own home, only tidier, until it sells.
The hard and expensive choice: upgrades
The lovely staging ladies we hired and the husband decided to go with alternative #2.
They say (and I hope they are right!) that homes that look dated don’t sell – because the homebuyers of today lack the imagination to see their own possessions in a house decorated by and full of the belongings of – someone else.
Our real estate agent said that the division among buyers was about 50/50, and we should do what we wanted to. That many people who might buy a four bedroom house were locals moving up, and would be buying for the school district and for more room for a growing family.
But she seems excited that the upgrades are being done, and is hopeful they will help sell the house more quickly.
Houses that don’t sell can hold up future plans
Which puts us in an interesting position.
Because we are looking for the best fit in a CCRC (continuing care retirement community), and will go to a lot of trouble to pick a specific one (or small number thereof) which will suit us, and they tend to be close to full capacity, we may be on a waiting list for a while.
This means 1) we need to get on that waiting list asap, and 2) we may be living like gypsies in a caravan, with this one sold, and no place to go for sure, for an indefinite amount of time.
After all our planning!
The supposedly accepted method is to wait until they offer you the place you want at the CCRC of your choice, and THEN put your house on the market and sell it in the typical 60-90 days it takes for the CCRC to have the unit you are offered ready for habitation.
The cart has gotten before the horse
On the theory that even if we were doing the ‘accepted method,’ we might as well get started on the known necessary repairs, and we did – but I never expected them to turn us out of our home, and to be living in a house – sans window coverings because the painter wants them gone and houses show better without them (!) – for an indefinite time, with NO unit offered to us for us to move to.
Not exactly sure how it has happened.
Part of it was the wish to get the house to market during the supposed spring selling time frame (which we will have missed).
Another, other houses staying on the market for a long time.
The third – get other people involved, when the one of the homeowners has very little energy and really needs help – and the juggernaut takes hold and roles on.
And now everything we own is in boxes in the basement – to get it out of the way of the carpet installers (here all day yesterday), the kitchen/dining flooring installers (soon), and the painter (thankfully scheduled while we will be away).
Consequences
We’ll be living, for an indeterminate amount of time (hope it isn’t long), in a house with no shades.
And white carpets.
And white walls.
And everyone agreeing that it is much harder to get stains out of white carpets!
Learn from me: you can’t control the juggernaut, and you keep poking away at the things you can control (changing the carpets) before you realize what you’ve done.
Corollary to Murphy’s Law: Anything that can go wrong will, and will cause a lot more work.
Another reminder to do these things sooner rather than later if you want to have any choice in the matter. I can’t imagine doing this ten years from now.
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.
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.
May is ME/CFS Awareness Month – the big day is MAY 12th.
ALL PRIDE’S CHILDREN:PURGATORY ROYALTIES DONATED TO THE #MEACTION FUNDRAISER FOR MAY 2018.
This is my contribution to the campaign – as a writer.
Please pop over to Pride’s Children’s blog if you haven’t seen the post (same as the Facebook post) – and consider getting or gifting a copy – this disease has millions of us WORLDWIDE missing from life. We’d love to get back to work!
liebjabberings 