Scary time of absent brain

The future is boundless; our life, not so much

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.

**********

21 thoughts on “Scary time of absent brain

    1. Alicia Butcher Ehrhardt Post author

      It’s finished, but I think outsourcing will get it ready for launch faster – thank you. They don’t go from our brains to the shelf, do they?

      MAYBE that’s a good thing. We’ll see.

      I think it’s good that I already have the third cover – and story part – in mind; I never dreamed I’d be this slow!

      Liked by 1 person

      Reply
    1. Alicia Butcher Ehrhardt Post author

      I have a surgery date – but it’s ten weeks from now, and a lot of things have to go right before then – and it’s like doing the high jump with no ability to run up to the pole plant.

      You do what you have to do. The time will go by regardless; I may as well try to improve things.

      Liked by 1 person

      Reply
  1. Lynda Dietz

    I’ve been pretty out of the loop lately, so it hadn’t hit me until today that you hadn’t been blogging as often. I’m so sorry your body isn’t cooperating . . . even more so than usual. You have one of the most pragmatic outlooks of anyone I know, and your positivity (while still being transparent and real) is inspiring.

    I hope and trust that your writing days are still many. You have such a talent, and a skill born of hard work and attention to detail. If you’re in love with Netherworld, then I really, really can’t wait to read it! Looking forward to that publishing date and sending big hugs across the miles.

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    1. Alicia Butcher Ehrhardt Post author

      I sometimes resent that I have had to control my emotions and outlook so draconianly, and other times I realize I do what I have to do.

      I don’t really have a choice – except making myself even MORE non-functional. And I love the writing – I can’t get back to the third book until this one is live – too many things at once reduce me to immobility.

      And the third one will be a doozy! Can’t wait to see the actual words.

      Like

      Reply
  2. Widdershins

    You can be quite proud of yourself for this post. 🙂 … well done.
    The ‘mystery ailment’ – may the resolution come swiftly and effectively.
    The reallocation of all those quadrillions of dollars, from the top to the bottom – wouldn’t that be wonderful.
    Sending you some hugs from our little ‘cabin in the woods’ RV. 🙂

    Like

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  3. Lloyd Lofthouse

    There is a recently new program out competing with Scrivener. It’s called Atticus. I’m not sure I should even mention it since I bought it and then had trouble learning out how to use it even though they say it is much easier than the competition. I had trouble with Scrivener, too, and quit never to return.

    Hitting my threshold for stress and frustration after the first two attempts, I set Atticus aside for another attempt later to see if I can learn how to use it. If it us really easier to learn and use as Scrivener.

    If you’re curious, have a look.

    https://www.atticus.io/

    I you decide to give it a try and it’s easy for you, I’ll try again and see if I can master it too.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Lloyd. I already looked at Atticus, a formatting program, not a content management program like Scrivener, and it is NOT flexible enough for the few features I need (which I can still get by a pass through Word 2011 for Mac).

      I am not about to change the ‘look’ of my books, not when my youngest daughter and I worked hard to get it the way I wanted; I also didn’t like their pricing structure (I already own Scrivener3 – which I haven’t even installed yet; I use Scrivener2, which I love, every day).

      Scrivener had a learning curve – I took Gwen Hernandez’ course years ago – but I’m very comfortable with it, and use it for EVERYTHING – tax projects, genealogy, marketing, writing…

      It and I have similar mindsets, I guess.

      It’s all in what suits you – so many different options. I still haven’t found another novelist who plots with Dramatica, for instance – and I can’t live without it!

      Like

      Reply
  4. Lee McAulay

    “I’m not sure if it’s … the beginning of the end of being able to write”
    When life beyond writing is limited by chronic illness, the thought of losing that ability must be awful. No amount of cheerleading from the sidelines can help, either – it’s *your* body that’s failing, not ours. Wishing you good health and wisdom is as much as we can do, and that just feels paltry; wishing you energy and sleep and the gift of patience might be better.

    Liked by 1 person

    Reply
    1. Alicia Butcher Ehrhardt Post author

      “I’m working on it” has always been my mantra. I just didn’t think it was going to be quite this hard!

      Wish, instead, that some of that research money the world is finally putting into long covid, reluctantly and grumpily, may result in answers – for the ones who were already sick when covid hit, too. After all, some of that money is my tax dollars!

      Like

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