IS IT DESIRABLE TO MAKE LITERARY FICTION GO VIRAL IN THE FIRST PLACE?
Big question. Big risk. Big reward?
Before talking about HOW, the question is WHY?
‘Going viral’ is a short way of saying ‘become wildly popular so everyone wants one.’
Also, potentially lethal.
It is one thing to have a product/idea be popular with the masses, but it is another to have the masses laugh at it.
A hula hoop going viral at the right time becomes a toy that almost anyone can buy – AND almost anyone can learn to use – at least sort of. Right before Christmas, at the right price (enough for a hefty markup but not expensive enough to break anyone’s bank), and balanced with the manufacturing ability to produce more in a hurry, hula hoops were very popular and sold millions. (Disclosure: I had one as a kid in Mexico, and was pretty good at it.)
But a book?
It almost seems contradictory to the concept of literary fiction to try to make it go viral.
Except that it has been done.
Something like two MILLION copies of The Goldfinch were printed.
Something like half of those copies were eventually pulped.
Unknown numbers of the ones purchased were READ.
Unknown numbers decorated coffee tables as the ‘book to have.’ Not to have read, necessarily, but to seem to have read. It being literary fiction and wildly popular, if you had a copy you wouldn’t necessarily tell your friends whether you had read the whole thing or not.
Full disclosure: I read the reviews, lots of them, and decided it was probably not my kind of book: too many of the complaints were pet peeves. Some day I will find out for myself, but the day hasn’t come when I can divert MY focus without derailing my own writing. Yet.
How did it go viral?
The most expensive way, the way of the BIG traditional publisher, with a campaign that put the publisher’s entire resources behind a gamble: that they could push a literary novel into being THE literary novel of the season, make it a ‘must have’ and sell enough copies to justify the advance, the push, AND enhance the publisher’s reputation.
Not just reputation, but selling a reasonable number of paper bricks at a hardcover price is lucrative – one well-publicized ‘winner’ can carry the publishing house’s season.
The economics get all fuzzy if the numbers don’t work out, or they would use this system for all their books every season. But the economics MUST work out, or the big publishers wouldn’t keep trying to find (make) the breakout novel of the season.
In sum, it costs a lot of money, but can pay off with a lot MORE money.
How to take advantage of the possibility if you’re an SPA?
Well, if you’re already a popular SPA like Brandon Sanderson, with a loyal fan base, you can kick it to the next level with a huge Kickstarter calculated to both satisfy those fans and create a beautiful buzz for your books. [Hint: He wrote four books in secret – and then releases them to his Kickstarter fans before anyone else is allowed to buy them.]
What if you’re an unknown SPA?
Then you have to hope like crazy that you catch the public imagination – or, possibly better still, the attention of a significant influencer, and get the push from someone else’s fame.
Because the product is not an easy one to sell. For one thing, they consume, each, almost a whole waking day. And there isn’t yet an audiobook so you can do other things while listening – plus it needs closer attention than many, to pick up and follow its varied threads. It’s a pretty intense experience to live a story with three main characters by sitting inside their heads, right behind the eyeballs, thinking their thoughts and registering the external world through their senses.
Not a short commitment from a potential reader, as a popular five-minute song might be.
Add to the mix an author with no energy due to a boring chronic illness – no energy to do the vaunted indie marketing, which requires dedication and verve, spending hours creating material and doing what a whole lot of professionals at a traditional publisher will do for a favored author: designer cover, a book tour, appearances on media from internet to live TV, promotions at Walmart, movie tie-ins for the fortunate… arranging, arranging, arranging – by someone(s).
The right mix of promoting the book and promoting the writer is crucial – time-critical and planned and managed. And still subject to luck. Not just the cost – but the contacts – are crucial to try to control the presentation and roll-out for maximum exposure.
So what do I OFFER such an influencer?
Few things can be left to random kindness any more.
The best value from an influencer is one who discovers your book – and promotes it on their channel of influence (think BookTok) – without any work from the author. Because they like it.
But no one can COUNT on that LUCK. Even when a book such as the lovely The Sound of a Wild Snail Eating, written by a very ill woman who paid attention to the snail in a terrarium, happens, there are friends and pushers, people who did the work of finding a publisher for her, who made it their job to promote her memoir and her writing. Another book which didn’t count on luck, but was awarded the Pulitzer for fiction, A Confederacy of Dunces, was pushed, after he couldn’t get it published and committed suicide, by John Kennedy Toole’s mother, to writer Walker Percy. Again, not something to count on.
What I can offer is the brownie points (does anyone still remember those?) from discovering something unique: a chronically ill and disabled writer who takes forever, but writes mainstream fiction – and writes it well, or the influencer wouldn’t even be considering using up their points for someone else. It could be pushed as ‘discovering the indie/self-published X’, where X is the influencer’s favorite important mainstream writer. I’m far too modest to suggest a comparison author, but my reviewers (at least two) have compared me to Jane Austen. It’s worth a thought.
And if you don’t go viral, how about getting banned?
Another path to notoriety! Otherwise known as ‘publicity.’ Anything to make a good story, right? Not mine – the influencer’s.
It’s a little harder for me – I’ve been looking to the future use of teaching Pride’s Children in schools, and have deliberately kept the actual words and events to the PG-13 level – but someone is quite welcome to take my third main character Bianca Doyle’s unorthodox way of getting a father for her children as scandalous and upsetting drivel to which innocent teenagers (!?!) should not be exposed. Go ahead – it takes little to get the righteous flustered and judgy.
Those are the potential arrows in my literary-publicity quiver
I am quite happy to discover and entertain more, if you have suggestions – I want to be widely read. I would like a few more reviewers, please rhapsodizing about my prose. You needn’t be fulsome – understated works, too.
I would like a huge contingent of breathless fans waiting for me to finally complete work on LIMBO (or LIMBO & PARADISE), to the extent of making preorders possible.
I would love a ready market for any prequel or sequel short stories about our merry band and their quarrelsome ways, and I will continue to work at my deliberate pace (or until cured) to add to the canon.
Wishes make good goals for 2023, if a tad unrealistic. One can dream.
Merry Christmas, Season’s Greetings, and HAPPIER NEW YEAR to all – may the holidays you love and celebrate bring you joy.
Success? I don’t know if others are in the enviable position of not writing for a living, but I am. Which is good, because I’m what we used to call glacially slow, until the glaciers started calving and melting with climate change. A friend called it ‘at the speed of continental drift,’ which still works.
My concern is that after I’ve put twenty-two years so far into the first two books of a mainstream literary trilogy, I want READERS. Legacy would be nice, but that isn’t exactly an aim, and if you’re not known during your lifetime, you will have to be unbelievably lucky in today’s world to be known because someone championed your work after you left us.
Disability – and now – retirement make writing my personal choice. I always meant to do it when I retired from computational plasma physics at Princeton; disability just made that happen at 40 instead of 66.
I spend my energy parsimoniously – there isn’t much of it, and I want it spent on writing when it is discretionary. I’m sure that if I had managed to persuade a traditional publisher to take me on, the marketing would have still been a problem – most traditionally-published works get six weeks on a bookstore shelf before they disappear.
I would like to see all the hoopla be about the quality and especially accessibility of the writing itself: as I have always found books such as Rebecca and Jane Eyre eminently accessible STORY- and CHARACTER-wise, that is what I’ve aimed to write. Maybe my view of ‘literary’ is flawed or limited (personally, I’m not a fan of ambiguity – others love it, or of speculative fiction – ditto, or of creatively formatted fiction): I want better, more intense, more compelling fiction with care for all the factors that make a ‘good book’. Which is why I appreciate the genre fiction with a literary quality – ‘Dune’ isn’t just SF: it is at least literary-quality SF, at best literary storytelling.
The problem is that ‘literary’ now covers anything that doesn’t fit elsewhere, a common contamination.
Instead of being the fiction that subtly raises literacy – and pleasure. As it was for me as an American child growing up in Mexico, with limited access to books in English and no libraries.
I want READERS. Readers who find what I write better than their usual fare. That’s how I define ‘success.’ It requires that I do a much better marketing job somehow.
I am just coming out of a period that started, really, far before Sep. 26 when I went to Stanford U. hospitals for a badly needed surgical repair.
It involved taking care of myself in ways I had to learn, going through all kinds of medical tests to make sure that someone with ME/CFS (me) would be a suitable candidate for surgery at all, and then getting there at the right time without the coronavirus putting a stop to the whole parade: I literally had a covid PCR test on Sunday Sep. 25 in a parking lot in Redwood City – all ready for the hospital the next morning – and being fairly sure I was not sick, but knowing that the juggernaut would come to a shuddering halt if I happened to be and be asymptomatic.
And it would take months to get another surgical date, months I did not want to have to face.
Husband and I had isolated in our apartment in the retirement community for over two weeks, going out for doctor’s appointments, and husband going down to dining to retrieve takeout every night for dinner so we wouldn’t be exposed to the cases that seem to randomly infect this place now that people are being so less careful with masks and gatherings.
I had literally been waiting 2.5 years for this surgery date, since I needed it just as the pandemic was getting going in 2020, and anyone who could avoid going to a hospital did so.
Before going to my medical destiny, I published NETHERWORLD:
It was finished in March, but the complications of the health stuff kept me from focusing on cover and formatting, and I finally got help from friends, Bill and Teresa Peschel of Peschel Press in Hershey, PA. Bill kindly and accurately produced the cover from my notes and comments (patient man!), and responded to many rounds of requests for corrections to the interior formatting of the paperback – and I did the final touches to the ebook cover and interior produced by Scrivener on Sep. 18 and 19 and uploaded the files, which Amazon accepted with relative alacrity, making me no longer a one-book author.
And then came the surgery and its aftermath – the HORROR
The operation went fine, and the results have been stellar and relatively painless, and most everything now works properly, and all of it as well as possible.
But pain management went flooey – starting with side effects of medication changes the week before, and then continuing for the most pain I’ve ever had, for weeks, accompanied by side effects from other new medications designed to help, to finally me getting off EVERY NEW MED, and back to my long-time stable pain medications from before – and them slowly being enough.
I tried to tell them I’m a non-standard patient; I thought they had listened.
Don’t know what I’ll do if I ever need to do something like this again, but there will be some very interesting and thorough conversations somewhere along the line: ME/CFS patients are NOT normal patients.
It’s over, I will be released from restrictions in a week
and I will be able to use our warm therapy pool, and then work up to riding my tricycle, and longer trips that the bare minimum rides on Maggie, my Airwheel S8 (a bicycle seat on a hoverboard).
And after getting my brain back these last few days, and catching up enough on sleep to be coherent (pain makes it IMPOSSIBLE to get rest), I have a big paperwork task to finish and send to the accountants.
And I will then be able to start up my new Macbook (I got the midnight blue one), and plug away at organizing the upgraded software I bought it for, and get going to finish the trilogy by writing volume 3, working title LIMBO.
I will be back to whatever passes for normal in this body and this household.
Nothing has yet changed on the research horizons
Rather, it seems that every day some scientist group has a new theory about what may be going wrong in the aftermath of viral infections such as Covid-19 and ME/CFS, and they want research money to find out if they’re right.
One of them will figure it out – the economic impact of millions of people coming down with Long Covid cannot be tolerated.
Except for the diehard holdouts, most doctors are starting to believe that post-viral illnesses are real and not psychological, or hysterical. They have no clue how to help us that gets down to basics and CURES us yet, but they are starting to treat the symptoms and minimize some of the miseries.
There is where HOPE lies: enough scientists committed to figuring it out, supported by research funds. Whether it is too late for people like me who’ve been ill for decades won’t be known for a while, and indeed the research horizon, my husband cautions, is more likely to be five to ten years than anything much faster: the coronavirus does an incredible amount of damage.
Some of it may not be fixable. I may not be fixable. Which would be a bitter conclusion I’m not ready to face yet.
All us post-viral illness folk still have to make it through the days
If you have it, my sympathies. If you have managed to avoid long covid, please be careful – if you get covid, your chances are estimated at 10-30% to not get better.
Have sympathy if you are not ill or have not lost someone dear – the tragedies are endless.
And send good vibes, pray, or cross your fingers – because I can’t wait to get back to spending my daily tiny allotment of energy FINISHING Pride’s Children.
If you read mainstream fiction, or psychological literary fiction, and haven’t read NETHERWORLD, it’s on Amazon in ebook and print. And in KU.
I would love to hear what you think – especially about whether it ends suitably.
And you can sign up to be informed about matters connected with the books at prideschildren.com.
PRIDE’S CHILDREN: NETHERWORLD IS WAITING FOR REVIEWS
If you hurry, you might be the first to post a review – poor NETHERWORLD is sitting on Amazon without a single one as I write this.
I’m slowly getting over the aftereffects of surgery, so I will be more proactive in the coming months.
FIRST SALE FOR NETHERWORLD BEGINS OCTOBER 19
because Amazon needs its price to not have changed for 30 days, and I have set up a Kindle Countdown Deal for my readers who follow this blog: you can even buy it for $2.99 in ebook on Amazon US that day (unfortunately, countdowns are a US thing, too).
OTHER ways to read and review:
IF you want to download an ARC
follow this link to the books’ site, and it will tell you how to join Booksprout and become a reader/reviewer (they even have other books you might like to download and read). While you’re there, if you haven’t clicked ‘Follow’ before, feel free to do so now – it is the best way to get details about the book delivered to your inbox, and to hear about sales in a timely manner.
I’m using this method because I am still not well enough to handle the back and forth of individual communication about ARCs; if you want that, it’s going to be about a month before I can commit to doing it (it takes a lot of work on my part).
I would appreciate it very much if you join, download and read, and review – and it will be much faster for you.
IF you would rather buy
simply mosey over to Amazon’s page for Pride’s Children: NETHERWORLD, and choose ebook or print. It is a bit longer than PURGATORY, but the ebook is the same price.
And, of course, I would still love a review!
It’s that easy.
But be warned: I write long books.
But then: that may be partly why my readers love them.
I’m slowly getting back to functional, but surgery isn’t easy for someone like me. All anyone really needs to know is that it seems to have been successful, and I’m working on the pain part, and can’t wait until I’m back to what passes for normal for me.
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!
If you are interested in my fiction, and haven’t signed up at its site, click on Pride’s Children: NETHERWORLD‘s announcement post for the ebook – but the print version is already up, cover and all, and Amazon has notified me it may take 3 days.
The ebook took ONE HOUR to be approved, late last night – I guess no one else was up!
Details at the link – not everyone who comes here is interested in fiction.
Check there, too, for the details of the two Kindle Countdown Deals that are set up – one for PURGATORY, Sep. 21, and one for NETHERWORLD, Oct. 19. Best way to pick up a copy of either.
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.
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.
More when there’s actually progress on this laundry list.
Be well. Have a great summer. Don’t work TOO hard.
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.
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).
He kindly provided a long list of questions, and after I got started, I realized I should post this here, and just leave the first two answers as a teaser on his blog, which you should visit and follow.
He starts his post with:
Publishing gurus are full of ideas for you. To optimize your sales, they might suggest new covers. They will tell you that your only barrier to startling success is a simple (yet costly) tweak to your book description.
Here is my list of answers – a good set to answer for yourself in writing. I’ve edited or changed his questions a bit in places to suit me better – you should read his.
What is success to me?
People reading and reviewing my mainstream trilogy – I am pretty sure it will take off in a big way some day, and these people keep me writing.
What works for you?
Doing it exactly my way, designed for a damaged brain and no energy – because it works.
Everyone else’s suggestions – I can’t follow them, and when I make the big effort, they don’t work for me.
Have you tested other options?
Yes, though not extensively – I’m VERY slow, and this takes time away from writing.
Have you played with the variables?
Not a lot – by definition, half of A/B testing is going to be wrong!
Would you drop what isn’t working?
In principle, yes – but I have to somehow decide people who don’t know me and my work know what they’re talking about. So far, not convinced.
Are you doing more of what works for you?
I am – and I do as soon as I identify something that works, I do more of it. When I have time and energy, the kicker.
What haven’t you succeeded at trying that might work?
Going viral (not something you can just ‘try.’) Getting on Oprah or equivalent. Practically, attracting a BIG influencer who goes to bat for me.
Have you tried that?
Have asked maybe ten – they all have shied away or answered in generalities or haven’t answered at all. Doing things their way works for them; altering, looking at the outliers, not so much.
Before changing, have you completed other projects?
Yes. I can only work on one thing at a times – very little ability to do elsewise.
Have you analyzed pros and cons of a strategy such as changing genres?
Not until I finish the mainstream trilogy (but I managed to tuck some historical fiction AND some science fiction into it).
What would your costs be?
Funny: They go from me, my time, and my energy, immediately to a very expensive version of let other people do it. I could probably afford it, if I were convinced it would make a permanent difference – but I don’t believe that, because the limitation is still me.
What would the cost/benefit of getting paid helpers be?
I would have to sell a LOT more books to make them pay for themselves, and, since I will never be able to create much of a backlist, there won’t be much help from other work, so it would depend on a single huge campaign for the trilogy.
How much money do you need to live?
Fortunately, I’m retired, settled into a retirement community, and okay.
How much MORE do you need for WANTS?
Lucky that way – none.
Do you have the helpers to effect this change?
Not yet, though I’ve approached several possibilities, and listened carefully to their answers.
Would this be an investment, or money down the drain?
It’s my life, and my only chance of a legacy, since I became chronically ill.
Is a helper worth the time or mental toll it will require?
Haven’t found one yet that is.
What’s keeping you from trying?
Lack of energy.
What’s the worst that could happen?
No increased sales, and the loss of a lot of money which should have gone to charities and the kids.
What’s the best that could happen?
Breakout – and a fame which wouldn’t make much difference to a very isolated disabled life, but would be fun (instead of always being odd woman out).
Is the new way of working a passion, an excuse, or an escape?
Passion, of course. Nothing else is worth the kind of effort necessary.
What makes your new approach significantly different from old projects that failed?
I’m doing it myself; the failed one approached traditional publishing and didn’t get a brass ring.
Are you happy or excited to make this new commitment?
Haven’t had a credible proposition yet; there’s one possibility in the works – a PR company. I’m waiting to hear, because they will have to do all the changing – I don’t have the capacity to.
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.
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.
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.
It is axiomatic that there are no overnight successes.
Because it takes huge amounts of determination and preparation to be ready to respond well when an opportunity finally comes along – and if you’re not ready, it will leave you in the dust and move on.
Take your American Idol singer
The pipes that astonish are not natural, spur of the moment, magically angelic. Nope. If so, they are most likely to freeze at the first sign of stress.
The singer not only sings a lot in the shower, but has had parents paying for individual teachers, has been singing in the church choir, has spent years listening to music, and has been through a whole list of roles in the school plays.
Being on stage in front of a bunch of strangers and wowing Simon Cowell is not a fluke.
The illusion that it is sudden and unexpected and a direct blessing from Heaven is for the AUDIENCE. The ones who want to jump on the bandwagon as it goes by because, “I’m just as good as she is.” It keeps them buying the advertised products, watching the shows, purchasing tickets for Kelly Clarkson when she comes to town.
Even the little Wow! stories are the product of hours and hours and hours of cameramen recording every remotely possible candidate practicing in the hall – to be scrolled through for the exciting bits AFTER the winner has been chosen.
It matters only for the individuals
The producers don’t care who wins – they have SO many contestants that their triage is stricter than that after a major accident: they may let a few charismatic duds go through a few levels they aren’t qualified for – one leaves in the random possibility because crowds are fickle, but the staff’s job is to make sure that the two or three possibles culled out of each thousand who apply are usable.
They have no investment in a particular candidate. It’s dangerous to have one because talent and stardom are unpredictable beasts.
But the individual candidates, those who want to win, have to be ready to win – if it happens.
Artists need support BEFORE
before they are recognized as somehow ‘good.’
before they get discouraged and stop producing amazing work.
before everyone else discovers them.
It is even more important for those who are slow, or for whom doing the work is a great mental and/or physical effort.
I know that I will never forget the earliest responses on Wattpad from other writers, the ones who kept me cheerfully sharpening my nose. Because they KNEW – and SAID so – BEFORE others.
Peter Hyland, one of my characters, says,
“None of my friends are perfect. And most of them are irreplaceable. They provide the mirror when I get too big for my britches. New ones are hard to find.” He squinted at the dying sun. “I need them far more than they need me.”
PRIDE’S CHILDREN: PURGATORY, Chapter 13
It is hard for people to commit, to say, “I’ve found this new writer/photographer/painter…, and you should look into their work” to recommend someone to a friend. What if the friend doesn’t like the new artist? Easier not to say anything, and just nod wisely.
But once the wagon is full, one more supporter isn’t going to make that much of a difference.
Getting started is hard – but up to the writer, who is the one to make the decision when something is first ready to be released to the public.
But keeping it going is much harder still, and that’s when the support can make the difference between someone going on to do creditable work – or quitting.
It may or may not be important, or a stepping stone of any size, but I’m saying thank you to all my readers who have been saying, “I like what you write,” since I started putting Pride’s Children out in serial form on Wattpad.
You may or may not have noticed the new badge on the sidebar.
Pride’s Children: PURGATORY has been named Indies Today’s 2021 BEST CONTEMPORARY novel, and I’d love it if those of you who read mainstream fiction would pop over to my other site, the one for the books, and sign up to follow that blog as I get ready to finish and publish the second novel in the trilogy, Pride’s Children: NETHERWORLD.
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
To Denver International Airport and back to Sacramento.
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.
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?
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.
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?
After much reflection, some of it in writing, other of it in the middle of the night, I have realized that the win, to be mine, has to come from me.
A real win is one you create yourself, the hard way, with blood, sweat, and tears. Since you EARNED it, you OWN it.
Since you created it, it can’t be taken from you (do remember your backups off site, though!).
Someone buying Pride’s Children PURGATORY – in paperback! – is a win, as is someone purchasing the ebook, or taking it out at Kindle Unlimited, especially when I haven’t done any marketing in ages. But it’s not something I have control over.
I had a recent win against Covid
As soon as the CDC said immunocompromised people would be on the short list for the early boosters, I asked my doctor AND my facility about it – to no avail. They said, “When we get it, we’ll let you know.”
But I started seeing other people with my same illnesses posting on FB about having already received the booster shot.
Regardless of how (I wouldn’t lie to get one, but don’t even know if others did, though there have been newspaper reports of lying), the key fact was availability.
So I nagged the doctor’s office, reminded them of my immune status, and they made it available. Then I arranged Medvan transportation, went and got the thing, suffered through the side effects (second day was quite flu-like, and I had more brain fog than I anticipated for the days after that), and, in another week or so, will feel I have done as much as possible to protect myself. And did NOT take that dose from someone getting their first vaccine.
I finished a tricky chapter in Pride’s Children NETHERWORLD.
As I get toward the explosive end of NETHERWORLD, it is getting even more important to get it exactly right, because even less time separates the end of 2 from the beginning of 3 than separated the end of 1 from the beginning of 2, and every story-second counts.
Sending Chapter 35 off to my beta reader was a key step: it is the 3/4 mark in several ways, and I have been forced to make the tiny detailed decisions that make the difference NOW, and not in some writing future – ‘when I get to it.’
It’s getting harder and harder physically and mentally
I acknowledge that, and move on.
Restarting after the brain fog is always tricky, because I have to assume I’m past it before I’m sure I’m past it, and restarting is part of the process of getting past it. What I mean is that it takes a huge amount of psychic energy to restart, sort of like the difference between static and dynamic friction (starting to move a piece of furniture across carpeting is much harder than keeping it going once you start (so don’t stop!)).
Apply that pressure too early, and all it does is extend the downtime.
Wait too long, and situational depression sets in.
And there is always something else that need my limited attention ability – and seems more important just this minute.
I live with this, write with this, and have been at it for a very long time.
There are rumors on the horizon of research for long-covid that might explain another post-viral syndrome, ME/CFS’s problems, and it is possible that even after 31 years it might be helpful. Rumors – but this one has some interesting science behind it. We’ll see.
But, as the husband reminds me, even if it works it will be years before it is available, and I can’t let any of that time go to waste.
So I face the fact that there’s been a break, and get back to work.
Yesterday I took the first step:
I re-read what I have put together, in these brain-fogged days, by following process and trusting it will work as it has every time before – eventually.
And even though there’s one tiny part in the middle of the scene where a decision has to be made about an order of events, the rest is written.
And the end made me cry (actual written steps in said process: “DIG DEEPER – CRY” and “BECOME THE CHARACTER – WRITE WITH THE EMOTIONS RAW.”)
The character needs it, but I am the one with the whip, forcing change. It hurts.
Being present in the writing – mining my own experience: “HERE AND NOW; BEING PRESENT!”
I may work in imaginary situations, but if they don’t get treated as real, with me there, documenting as it happens, it never converts into something good.
From my Journal: “… is nice – but she needs extraordinary, and open to a degree she won’t be able to demand from him.” It is either there in someone, or it isn’t.
Voltaire said ‘the best is the enemy of the great.’
Many people think perfectionism keeps you from getting something finished and out the door and good enough.
But in writing something unique, it matters. Not that you become a perfectionist, and never get anything done, but that you not let ‘good’ or ‘good enough’ or even ‘good enough for government work’ keep you from achieving your own standards.
Because I hope my readers are the people who have those same standards.
If you are, you will know that about yourself.
THAT’s where the wins come from.
So back to the drawing board, salt mines, design board
While I still can.
Because if it’s meh, it costs me way too much to be worth it.
Chapter 36 is well started, and I am imbuing it with the frustration of writing in the middle of the challenging circumstances that are a pandemic which no one expected would last this long.
And a lot of the pain.
If you look for it, something will pull you back to the task.