Surviving an extraordinary month in one piece

View of a bridge down a city street with tall buildings; snow is falling, there are cars and people on the street.
So many places you can be!

WHERE HAVE I BEEN AND WHAT HAVE I BEEN DOING?

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:

The Pride and Joy – 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.

Nope.

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.

**********

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50 thoughts on “Surviving an extraordinary month in one piece

  1. Widdershins

    Heavens to Murgatriod! What an adventure that was! … glad to hear you’re back at the keyboard. 🙂 … I’m slowly clawing my way out of the hole our adventure has left me in. I’m doing fairly well now, aches and pains notwithstanding, and I’m starting to believe in the possibility of getting into my writing again as this winter closes in around me like a protective shield … then it’ll be full steam ahead, if I can manage it! 😀

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  2. Lee McAulay

    “If you have managed to avoid long covid, please be careful” – this is why I stay at home. My energy and health is what keeps my household ticking over. Life becomes a series of risk assessments, trying to find a balance between cautious and carefree. Even seasonal flu – had it twice, bedbound for a fortnight both times: don’t need that again, never mind C-19 with all its unknowns. Wishing you a bucket of energy that overflows into your days.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks – hope you get energy, too.

      Did you mean you’d had the flu THIS year twice? Our flu shots reach the two weeks period next Monday, and we’re basically not seeing people until then, but will start having dinner with other residents after that – scary, even for only an hour in a dining room with good ventilation and high ceilings.

      Have had all recommended boosters. Wear a mask at all times out of the apartment (others don’t!).

      I hope they’re effective at finding an actual vaccine that stops these kind of viruses. Which is why we need good science education in our schools, and opportunities for kids from everywhere who might be able to develop the science and vaccines the world needs.

      I already have the equivalent of long covid – carefree isn’t on the horizon.

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  3. Lloyd Lofthouse

    Have you considered writing a memoir?

    One of the writers in my every two weeks, Tuesday night critique group (we started meeting through Zoom soon after COVID hit), has been writing a memoir of his battle with cancer. It’s so descriptive, I don’t think I’d want to go through what the has: the botched surgery where one surgeon cut out the wrong part, not the cancerous one, then the chemotherapy, and the radiation.

    Then there was the corrected surgery to take out the part the first surgeon got wrong.

    Then he went back to make sure all the cancer was gone and they found some ( not much but any sign means starting over) so he went through a 3rd surgery and more chemotherapy and radiation.

    He started the memory when he was first diagnose with cancer and sometimes he shared a chapter just a few weeks after what he was writing about.

    From what I’ve read over the last almost three years, I can only say it is voluntary torture gambling that he’ll beat the cancer. The scene I can’t get out of my head was one day he had to get out of his apartment, put on his mask and went for a walk avoiding everyone. The pain got so bad, he stopped by a redwood tree and hugged the tree hoping for some comfort and relief.

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      1. Alicia Butcher Ehrhardt Post author

        Didn’t notice them. Sorry!

        Comments are not for the grammar and spelling police unless the commenters are purporting to BE grammar and spelling police; if so, they’ve put themselves up for scrutiny, and I sometimes take a poke.

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    1. Alicia Butcher Ehrhardt Post author

      How difficult for your friend.

      After 33 years of ME/CFS, what I really want to do is ignore it where I can, and do something with my very limited time and energy and functional brain, and write something that give me pleasure.

      Unfortunately, my disease is too common – and has now been completely overwhelmed by people who, if they hadn’t had covid, would be diagnosed with what I have because they are that similar.

      There are many memoirs already written with this disease as the backdrop to a life; I don’t care to add my case to the annals of those.

      And I have taught myself to write FICTION, which feels like a higher calling (at least to me). And possibly has a wider audience?

      I don’t think anyone wants to read MY memoir. Even I find it boringly repetitious to live my life, constantly micromanaging my physical body so I can have little whiles of being able to use my brain. BORING!

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    1. Alicia Butcher Ehrhardt Post author

      Thought I had already bored EVERYONE ad infinitum with it. It was literal hell – my body felt as if every muscle fiber was on fire for most of the time.

      I only didn’t go to the the emergency room because I was pretty sure they’d make it worse.

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        1. Alicia Butcher Ehrhardt Post author

          Thanks for the gentleness of virtual hugs – the real ones hurt sometimes.

          What else am I going to do with my life? The story is unfinished, and I am not a quitter.

          I already know how it ends – but I want to be able to read the words. The words are so much better than a quick summary of what happened.

          I want to go back to India, to that night after Sir Ian’s ill-fated party, to the garden with the lampposts and the snapped twig…

          I want to go back to Kary’s house at the end of NETHERWORLD, to where she is trying SO hard NOT to bias Andrew’s decisions…

          I want to go back to the moment when Andrew accepts the fateful offer – ‘All in fun…’

          I want to see Cecily’s face when Andrew turns Opium down, and hear Elson tell Andrew to stop being an idiot…

          That’s where the strength comes from. If I can do that, I have a place to go hide.

          Liked by 3 people

        2. acflory

          Aaaaah. That I can relate to. The joy of writing for me is getting lost in the story/world/characters. I do care about Readers but…until I hit that ‘Publish’ button, the story is all for /me/. 🙂
          One step at a time, right?

          Liked by 1 person

        3. Alicia Butcher Ehrhardt Post author

          I can get emotional about the characters, but not about the publishing; that decision was made long ago.

          But it’s always been just for me.

          Maybe after you manage to write several different stories, as you have, it gets easier to divest. Like letting your children grow up in peace and make their own good and bad choices.

          Liked by 1 person

        4. acflory

          Mmm….the Vokhtah series is unfinished but I’m really struggling with it. As for Innerscape…it’s not completely finished either so I do find myself unable to completely let go. You’re not alone. 🙂

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        5. acflory

          I set myself a task: can’t do anything new until I’ve finally finished the series. So of course I don’t want to do it! Only partly joking. I’ve been working on that world since 2004. I want to let this one go but I’m too much of a perfectionist to just pour it out there, warts and all. It is what it is.

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        6. Alicia Butcher Ehrhardt Post author

          I have restrictions for myself, but they’re because I WANT to finish the trilogy.

          No one but the author can make the decisions you’re making: is it best to have something risk being unfinished forever, or to have it be imperfect? Toughie.

          My intent was to have a version of the final book of the trilogy, just the story, available before surgery – and then they started throwing extra tests at me, and I couldn’t do even that.

          There are so many questions raised by the end of Book 2 that I want to finish the trilogy with MY answers and solutions; I’m going to be annoyed if I don’t make it, especially if I don’t complete the trilogy because of other stupidities in my life that should not have been my responsibility, but have become so.

          Oh, well. None of us live forever.

          Liked by 2 people

        7. acflory

          Hey, you WILL finish it, and I think you’ll start thinking about a new story as well. You’re too stubborn not to, besides, I believe that having a purpose is /the/ fountain of youth. Or life. Or something. 😀

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        8. Alicia Butcher Ehrhardt Post author

          If it’s up to me – and the events of the past month were terrifying enough to provide any lack of motivation: none of us have infinite time.

          And I have delusions of quality – which have been stoked by too many people.

          And then one today said he had trouble getting into the first scene of PURGATORY, which took me down a peg.

          But he ALSO wants to write from a woman’s pov – and I told him he has two complete women he can live through a whole story with in PC – if that’s not a master class, what is?

          You’d have to agree Bianca and Kary are not very similar…

          Liked by 1 person

        9. acflory

          Oh Alicia! The armchair experts! Somewhere amongst my posts is one about my 1 star review. 😀 The guy who wrote it read 6%, and said the beginning was boring, and he couldn’t find the story.
          When I’m really down I look up famous writers who received 1 star reviews or the equivalent thereof. Always makes me feel better.

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        10. acflory

          You too, huh? I don’t have a single family review either. I think a couple /may/ have read one of my books but if so, they’ve never said anything. I suspect that part of the reason is that we’re ‘Auntie Andrea’ or ‘Mum’ or ‘Friend-Andrea’ etc. As such, we couldn’t possibly write anything worth reading. And -shock horror- imagine if they had to actually talk to us about it? Especially if they hated it, or thought it was crap…etc etc etc.
          We get pigeon-holed so easily. :/

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        11. Alicia Butcher Ehrhardt Post author

          I was so thrilled to take my four sisters their personal paper copies…

          Absolute crickets – they never even mentioned me to their book clubs that I know of.

          Really pokes a hole in your self-confidence. Fulsome reviews for perfect strangers help, but being the unappreciated prophet in your own land actually hurts. I like to think I would be more supportive (and I have been, stroking my next sister’s books on volunteering because she seems to need it). Sigh.

          Liked by 1 person

        12. acflory

          Yeah. That lack of reaction made me feel like such a fraud for so long. How could I possibly think I’m a writer? Now I simply don’t talk about my writing. It’s easier. -shrug-

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        13. acflory

          No…. I had the whole story written by 2011. Then I realised I’d never get a trad. pub. to look at it. Then I thought I’d use some of the beginning to write a sort of prelude. That’s the story I published in 2013. But that prelude introduced 2 characters who did not appear at all in the first version. So since then I’ve been trying to either integrate the characters into the original story: fail. Now I’ve finally accepted that it’s a new story that’s partially written. It’s complicated. And my energy levels aren’t what they used to be either. -shrug- I’ll get there.

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        14. acflory

          I’m not sure how much anaesthetics have changed, but I remember being told that a general takes at least three weeks to work through your system…and that’s a ‘normal’ system.
          You have to be kind to yourself and accept that you can’t do what you want to do…but only for a while. It’s temporary.

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        15. Alicia Butcher Ehrhardt Post author

          Ah. I hadn’t heard that timing – you’d think the surgeon would warn you. All she gave me was a list of things NOT to do for six weeks after.

          The effect on my brain has been even worse than the pain – I thought I’d never get myself back. It they had mentioned the recovery time, I would have relaxed. Thanks!

          Liked by 1 person

        16. acflory

          Gah…sometimes the medical profession are idiots. Your doctor probably assumed you’d know that the six weeks was how long it would take for ALL the crap to work its way out of your system. Yet how are we supposed to know /that/?
          I only know because one ‘human’ doctor told me, more years ago than I can count.
          -hugs-

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        17. Alicia Butcher Ehrhardt Post author

          Well I appreciate that you shared – because they certainly didn’t. They seem to have been competent surgically, but you’d think we’d have a right to a bit more than that.

          Maybe I would have gotten a bit more if I’d showed up in person for the followup, instead of telling them nicely it would be a video visit or none – because I was still completely crashed two weeks later.

          Liked by 1 person

        18. acflory

          Maybe, maybe not. I think some medical people are just better at communicating than others. Or perhaps at their level of knowledge they simply can’t remember what it felt like /not/ to know.

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        19. acflory

          Vokhtah is about as niche a story as you can get, even for scifi/speculative fiction, so I treasure each every one of those fans because they had to /work/ to get into the story.

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        20. Alicia Butcher Ehrhardt Post author

          The easy solution would be more hand-wavium: postulate what you were planning to figure out – and don’t do the detailed research and explaining.

          I don’t, for example, question most of the details in Dune; I don’t care. The invention doesn’t have to be plausible to a deeper degree if it hangs together reasonably well in the author’s mind.

          Liked by 1 person

        21. acflory

          Yup. I’m sure we’ve both read fiction that was just plain /wrong/. Sure there are readers who either don’t know or don’t care, but we’re writing for ourselves, and we care so…-shrug- A curse indeed.

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  4. Jack "Blimprider" Tyler

    Good morning, Mi’lady, and I’m glad to hear you’re on the mend. Episodes like this are bad news, and doctors don’t seem to want to hear anything about you being outside whatever they consider “normal.” I’m very resistant to drugs and need a high-end dose — doctors accordingly view me as a drug-seeker. I’m lucky to have been with the same doctor for over a decade, and he’s seen how my body just “disarms” most things he puts in it. But if I lose him, I’m looking at another 3-5 years training another one. The joys of getting old, I guess. You be careful on that hoverboard, ya juvenile delinquent! YouTube’s full of videos of those things throwing people across rooms, into streets, and so on. Make sure the training wheels are firmly attached; people will be wanting to read your third book!

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    1. Alicia Butcher Ehrhardt Post author

      I’m a cyborg on Maggie, and the ride is smooth as silk – I float down the hallways in our carpeted four-story building.

      Outside I’m always extra cautious, and now, since I have not been riding outside nearly as much (we’re still isolating, and it hasn’t been comfortable until recently), it is something I pay attention to. But there is nothing like floating slowly through the Rose Garden, and I’m such a ham I love to stop and demonstrate – and offer a chance to ride – to people with a look of wonder on their faces.

      And I can’t wait to continue the third book – and hope to get it done much faster, IF quality doesn’t suffer. I do get into channeling the characters somewhat faster, now that I’ve spent so many words with them.

      Once I get back on the tricycle, too, and in the pools, I’ll consider this whole episode closed – can’t wait.

      PS There ARE no training wheels. And I knew I’d regret it the rest of my life if I didn’t try it.

      Liked by 1 person

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