Still Alive

2020 hat

Still from What We Do in the Shadows on FX. The hat is cursed.

It’s been… oof. It’s been a lot lately. As my last couple posts probably indicated.

But I’m still here, still trying to figure this shit out, still surviving. My thyroid replacement dose is now at a much more livable level, the brain fog has started to lift a bit, and I’m getting better at preventing major crashes. We’re still not sure what’s going on, but we have a couple of promising leads. Getting to the bottom of this is going to require the help of at least two more specialists, and I really struggle with the phone calls necessary to get that sort of thing rolling.

Meanwhile, ugh, the medical bills that are piling up around here. I’ve gotta say I hope you’re doing better than I am on the Working in Pandemic Times front, Reader, because I earned 92 whole dollars last month.

My brain is now functioning just enough for me to feel like I really need to be getting on with the promotion for this new book I have coming out in a few months, but not enough for me to actually do any of the things. A wonderful friend of mine who has PR experience is trying to point me at the tasks that need to get done, but I suspect it’s probably a lot like trying to get a kitten that’s all jacked up on catnip to study for a college physics exam. Sorry, Nova. ❤

So, yeah, I don’t have a lot to say today. I just wanted to poke my head up out of the muck to state that I’m still alive and kicking. Things were pretty dicey for a while there, so this seems important to say.

I hope you’re all still alive and kicking too, and staying safe.

And hey. Buy my book.

Syncope

1024px-pietro_longhi_027

For those keeping score, I can now add fainting to the list of health bullshit piling up around here as I adjust to life without a thyroid.

I actually have a lifelong history of fainting from some undetermined underlying cause, and then being fine afterward, but it’s been a while and this time my husband says I was turning blue. So that seems bad. And I can almost always track what (admittedly nonsensical) factor led to the fainting, but this time it happened after nearly no provocation.

Ten minutes, tops, kneeling down to pull some weeds. Felt weird, so I stopped. (I honestly am making a very real effort not to push myself and to be mindful of my current limits.) Went up to the porch to sit down. Next thing I know, my husband is in my face urgently instructing me to breathe and I guess it’s been about five minutes. He’d called an ambulance.

The rest of my Saturday sucked.

greetings from the eye of the storm

For those of you who’ve been wondering if I’m doing all right, following my full thyroidectomy and surprise cancer in April, I’m afraid the answer is no, I’m really not.

It’s funny. You expect these things to be so much more linear than they end up being. Have problem, identify problem, fix problem, problem all better. Haaaaaaaaaaaaaaah no.

There is this very nebulous post-surgical phase that I glossed over in one of my previous posts that can easily be summed up with the innocuous words “once we get my med dosages under control.” The ease of naming this phase is in directly inverse proportion to the difficulty of actually getting my med dosages under control. More euphemistically and also more accurately, I’m currently trapped in post-op Hell.

There was an earlier, more blissfully ignorant time in my life – about three months ago – when I imagined that adjusting to having no thyroid gland and relying on a carefully-prescribed dose of ingested thyroid hormone wouldn’t be all that dissimilar to living with an under-performing thyroid that had been slowly trying to kill me for at least twenty-three years.

I was so, so wrong.

For the first, I don’t know, three weeks after the total thyroidectomy, I felt like I was making slow but steady progress toward a new kind of normal that wasn’t all that different from my previous normal (which was nice but also sort of disappointing – I want to feel better now that I’ve addressed a persistent health issue, not the same!) But then, oof, things started getting weird. New symptoms showing up every week, a regular freakshow of bodily dysfunction.

Hair brittle and falling out. Eyebrow dandruff? Can’t touch hot things. Can’t touch cold things. Jitters. Freezing all the time, except at night when I’m drenched in sweat no matter how high we crank the a/c. Nausea. Weird new plant allergies. Intense hunger pain. (To clarify, I had not experienced the sensation of physical hunger since summer 1996. Lost it during the first trimester of pregnancy and never regained it until now — really suddenly and grippingly.) Vertigo. Blurry vision. Trouble focusing my eyes on a single object. Vocal weakness. Mood swings. Shoulder blade pain and crackling. Breathlessness. Weird leg pains. Hand tremors, body jerks, and lack of fine motor control. Brain fog. Tiredness. Tiredness. Tiredness.

Oh and by the way, the scar really itches.

neck scar 3 months

It’s looking pretty good, though.

Probably the worst thing I’ve been dealing with has been the brain fog. There are days when I feel like I’ve never woken up. Days when opening my eyes takes more energy than I can summon. Days I can’t remember because I was so unfocused through the whole thing. I often struggle to read anything longer than a single sentence, because my brain can’t connect two thoughts to each other. When I try to read a paragraph, my eyes wander to another spot on the page. I feel like I can’t generate original thoughts or synthesize information. I’ve had to all but give up on the notion of making any kind of plans. I have no way of predicting when I’ll be functional and when I’ll be only semi-conscious.

Sometimes it’s worse because it’s been more than three hours since I last ate; sometimes it’s worse because I just ate something that I apparently can’t metabolize now. I’m having severe reactive hypoglycemia crashes that render the entire day useless. I was not hypoglycemic before. I have been on a gluten-free/dairy-free diet since 2004; the list of foods that I can’t tolerate anymore is growing at a cancerous rate by the day.

Right now, as I type this, it is the end of a brutal week in which I’ve fought tooth and nail to try to get to the bottom of just what foods are knocking me flat and what I can eat now for the energy I need in order to think straight and not get the shakes. I crashed yesterday but not today. Thursday but not Friday. It’s always a step forward, then another step back. My husband has been the real hero of this story, ever ready to leap into action when he can see my blood sugar taking a sudden massive nosedive.

For the moment, my mind is as clear as it ever gets these days, so I’m taking advantage of the pseudo-clarity to get some thoughts down. Most of the time now, I feel like I’m disappearing.

Apparently white rice in all its forms is now The Devil, which comes as a real blow and a major challenge to a gluten-free lifestyle. Also, apparently, oatmeal and a banana is okay for breakfast, except when it’s not, and a small glass of orange juice is Right Out – except as a pick-me-up when I’m having a major crash. Potatoes seem to be safe for now, but onions live on the edge of Dangerville, and shrimp are okay when I cook them this way but not that way. Fruit smoothies are good, but not for breakfast. Eggs are safe. Sugar is not. Honey is eeeeeeeeeeeh. Green leafy vegetables, walnuts, and grapefruit mess with my meds. It’s a frigging minefield.

And now I’m all bogged down in food talk, but that’s not the point. The point is that my own body is now an uncharted land that I have no idea how to navigate, and hooboy is the terrain inhospitable. My last visit to the doctor was in early May, and my next one won’t be until the end of this month. That’s a great big wasteland of what the hell is going on and what am I doing. I’ve had two med adjustments and one liver ultrasound in the interim. After looking at my latest bloodwork, the doctor called to ask if I was even taking one of the meds prescribed, because I guess my levels were shockingly low. The current state of my health is, in sum, a total shitshow.

So, ha, this notion I was sold that I’d have my thyroid removed, be down for “a couple of weeks,” and then be able to “resume normal activity” was a gigantic fat lie of mythic proportions. I needed to have it done, but some realism from the professionals on this subject would have been nice. When will I actually be able to enjoy something like normal health again?

* huge shrug *

Naturally, this has all really sucked right in the middle of the time I was supposed to be using to craft and implement my marketing strategy for the BOOK you might remember I have coming out later this year. It is, for the record, intensely difficult to perform businessy functions when you’re barely literate from brain fog and can’t process the information you do somehow manage to read. Marketing plan? I barely even know what those words mean right now. A friend of mine very helpfully threw together a pre-launch timeline for me and it looks like they wrote it in a foreign language.

I’m actually, no lie, amazed that I’ve been able to type all of this out. This is the most I’ve been able to process words in months. I fully expect to be back to near-delirium tomorrow.

So for now, here’s me waving to you from the eye of the storm. Here’s hoping I wind up being Dorothy in the end and not the witch smashed flat under a crashed house.

When I have my words again for another brief spell, I want to tell you the story of how my dog saved my life.

fuzzy Dogwood face

March was, truly, The Longest Month.

At the beginning of it, I was halfway through my fundraiser, just focused on raising the money to do my art. Working with my cover artist. Starting to make publishing plans. Feverishly writing project updates to keep up the momentum.

By the middle, I’d secured my funding but was in limbo waiting to receive it, while having to shift my focus to changing how we go about our daily lives in the midst of a growing pandemic. I threw myself into formatting the novel for printing, researching art supplies for backer rewards, and of course following the news as it changed by the hour.

By the end, we were fighting to figure out how to protect my husband at work, because he doesn’t get to stop going just because there’s a deadly disease tearing through the world community. Still waiting for my funding after what felt like an eternity of processing time. Wondering how we’ll manage without my income for the foreseeable future, because no one needs a dog walker when they’re stuck at home. Like everyone, struggling to obtain necessary supplies in the post-apocalyptic landscape that our grocery stores have now become. Trying to help my husband figure out how or if he’s going to be able to make the movie he was supposed to start filming this summer. Square into survival mode.

All the while, the Sword of Damocles hanging over my head in the form of a non-COVID-19 health issue that I’m not able to get treated for right now because local health services are closed to everything but emergencies. When will my thing become one? Big shrug. Who knows. The minutes tick on.

And now that we’re four days into another month (my birthday month, incidentally,) it already feels like March was a lifetime ago. An eternity of waiting, of wondering, of holding patterns and hope and disappointment and sudden loss that we’re all experiencing together, in our own ways. Planning is one thing that’s especially painful for an autistic person to have to give up on. Indefinite uncertainty is not something I do well. All we get to do right now is react and that’s… exhausting.

That’s why we’re all so tired.

Already I can’t remember what my larger point was going to be when I decided to write this post. I had one. But that was half an hour ago, and in April 2020 time, that’s like at least a week. All I can remember is that I wanted to share something good with you in the midst of all of… this.

I wanted to show you this lovely thing that was made for me by my wonderful artist daughter-in-law, Katelynn Cuciak.

Last year (by which I mean 2019, not March,) when I was getting ready to publish Mornnovin, it was my intention to secure a logo for my publishing imprint before the book went to press. That didn’t end up happening in time, but now it is my absolute delight to present to you the logo of Dogwood House LLC, the publishing house of The Way of the Falling Star:

Dogwood House logo badge border

You may recognize the handsome model.

model

Hento basking in the sunlight under his favorite window.

I think she did an absolutely stellar job of turning my beautiful buddy into a lasting icon. From now on, this excellent face will be appearing on all of my books.

And that’s what I wanted to leave you with on this the nine hundredth day of the year C-19. Stuff is scary right now, and weird, and there’s so much to worry about — and I still, still don’t have my funding (although I tentatively expect to see it hit my account on Monday.) I’m off to go sew some homemade face masks because that’s apparently what we’re doing now in this dystopian timeline, but first I wanted to give you something nice: the fuzzy face of Dogwood House.

Stay safe, stay healthy. Stay home.

First Friday Update, and it’s a Long One

From the Kickstarter fundraising campaign for Trajelon: The Way of the Falling Star Book 2 on Kickstarter, Friday February 21st 2020:

It took most of the day to kick in, for some reason, but the price of the Mornnovin eBook on Amazon has finally adjusted to 99¢. It will remain at that deeply discounted price at least until February 26th. I may or may not be persuadable on the subject of extending the sale for an additional week.

So now that the stress of that unexpected snafu has lifted, I can do a proper update.

It’s Friday, five days in, and as of posting this the fundraiser is sitting pretty at $821 or 22% funded. We’re nicely on track. The next big goal, obviously, is getting to 25% ($925) and I’m confident we can hit that mark easy-peasy before the end of the weekend. Please, keep talking up this series and sharing the link with your friends, family, and followers.

Trajelon is a special book not just because it’s mine and I have to say that, but because it explores issues and themes that I don’t think we see often enough in fiction – especially not in the sparkly elf magic genre.

I’m going to get real with you for a minute.

I’ve talked before about how the version of Mornnovin that is now published is the culmination of thirty years and four versions of telling that particular story. What people may not know is that I’d also written Trajelon once before.

In late 1997, I was 18 years old and I’d made some terrible decisions that I was locked into living with for the foreseeable future, both because of the nature of responsibility but also because of pride. People had tried to warn me, and of course being the age I was, I knew everything. I’d been downright insolent about my conviction that I knew what I was doing.

So there I was, miserable, bridges burned, everything to prove, struggling under the load of several massive responsibilities all taken on at once, knowing that I’d made the bed I now had to lie in. I was also trying to pass my first semester of college as an English major. I can’t remember now precisely which combination of events led me to come to this conclusion, but I started to feel that although I was reasonably good at academic writing, my creative writing was a clear waste of my time. I actually went as far as deciding to give it up.

I think, now, that I might have been trying to punish myself.

That take makes sense in hindsight because as soon as I’d grounded myself from the sort of writing I actually enjoy doing, two things happened.

One, at odd moments I started doodling scenes that weren’t supposed to be part of anything, so I was free from the feeling that they had to be any good or make any kind of sense or fit within a larger narrative. This would come to be important later.

And two, the scenes I was scribbling down without any commitment to story or quality were all about bad things happening to Loríen.

Because writers have to write, even if they’ve made bullshit nonsense declarations about how they’ve given it up, a story idea did eventually coalesce out of all of these snippets. And because of where I was, the story was dark. The finished product was horrible, but it was genuine – a savage cry of pain from someone who believed she had no right to it.

Fast forward ten years. Now it’s 2007. I’m still living in that hell of my own making, but it’s different because I’m ten years older and time does change things, for better or worse. Now I’m working a crappy retail job and it’s killing me. To save my sanity, one day, I pull some blank receipt paper out of the cash register and in tiny, cramped letters I start scribbling some scenes that aren’t supposed to be part of anything. They’re just junk for my brain, something to keep me alive. Because they’re not for anything real, I don’t worry about them being any good or fitting within whatever other arbitrary writing rules I have for myself. At night, while the household is asleep, I transfer the cramped letters from cash register paper to computer file.

smallscrap

One of the receipt paper scraps miraculously survived to be found during a deep clean of my writing space in 2013.

After a while, I realize they are actually starting to make a coherent story, but it’s not canon, I tell myself. It’s just some cracky Asrellion fanfiction. Just some mindless entertainment. I keep giving myself permission to tell a different kind of story from whatever I imagine canon to be.

By the time I leave that crappy retail job, I find that in my time there I’ve managed to scribble onto bits and pieces of receipt paper what amounts to roughly twenty typed pages of… something.

Then I realize that what I have on my hands isn’t just something, it’s the seed of a new version of Book 2. One that actually has something to say besides screaming in wordless agony. The only problem is, this new book that I can see laid out before me is far too good for the terrible most-recent draft of Book 1 that would precede it.

Then I realize that I’m going to have to write this book, which means that I’m also going to have to rewrite the first book in the series in order to lay the necessary groundwork.

That’s the story of how I came to begin my ground-up re-imagining of Mornnovin in 2008.

It turns out to be a good thing that I took the time to do that first, because I wouldn’t have been ready then to tell the story that I ultimately had in me in 2016 when I wrote Trajelon over the course of six intense months. By then, I had escaped Hell. By then, I was safe. By then, I had some perspective on what it is not just to live through but to survive trauma and depression.

The first incarnation of Trajelon was what I needed it to be when I screamed it up, all those years ago. It was catharsis. I don’t blame it for its darkness or its ugliness any more than you would blame a post-surgical scar for its raw appearance. This iteration of Trajelon is what it needed to be. Almost Athena-like, it sprang fully-formed from the brain of its creator. And it’s no longer a cry of suffering. It’s… a meditation on living with the suffering that inevitably comes along with the triumphs we experience in life. Living with, enduring, growing from. Learning to discard where possible. Drawing into our identity and building off of where necessary.

No doubt this is scary territory for some readers, but that’s exactly why I think it’s so important to tell these stories. They can’t all be about glorious victories on the field of battle. There are more shades to the spectrum of the human (elven?) experience. I so wish this book had existed at a time when I could have drawn strength from it. Now I no longer need to draw on that kind of strength, but others do. I know they do.

So maybe this was a big old heavy update for a Friday evening, but I hope you don’t mind the candor. This book is very personal for me, as you now understand, and that would have become clear anyway as soon as you read it. Because I think that’s actually its truest and purest strength, I wanted to be up front about it in this fundraiser. I am pitching to you a fantasy novel written by a survivor of abuse, trauma, and depression written for survivors of abuse, trauma, and depression.

If you, like I do, think that’s an important thing to have exist in the world, please help me get the word out and bring it into reality.

And thank you for letting me get real.

Luftpause

OLYMPUS DIGITAL CAMERA

To be blunt about it, the last few years of my life have been crazy. It has often felt like I was caught up in a hurricane — a sense of rushing wind, of not knowing where I was being swept to or how fast or where I would land. Some of that motion has been of my own making, but it has been no less disorienting or tumultuous than the storms that came from elsewhere.

Earlier this month, after finally delivering the last copy of Mornnovin to the last Kickstarter backer who was due one, I found myself suddenly between chaoses long enough to take a much-needed beach vacation with the best man in the world.

IMG_20190507_112106

If we look exhausted, it’s because we drove through the night to get there.

As I was sitting on our shady balcony in the nice sea breeze with the soothing crash of the surf in my ears, I realized that for the first time in I-can’t-remember-when, there would be no major thing waiting for me upon our return home. There would just be… life, such as it is.

After swimming dizzily in the void of that realization for a few minutes, I decided it was a good moment to take a breath and have a look behind me. I opened up a Word file on my laptop and started a bullet-point accounting of everything that had led to me being in that moment with that man on that beach.

The resulting list starts with Jiro’s death in December of 2013, ends with leaving for vacation on the 6th of this month, and pared down for brevity is ten pages long. So many things were happening to me or needed to be done that it’s no wonder I felt like my whole world was in the air.

Our return home did not end up being quite as leisurely as I expected, what with an immediate dog crisis and the revelation that there are ongoing issues with the hardcover edition of Mornnovin (ugh), among one or two other annoyances. (Why does the office suddenly smell like vomit?) But once the dust settled even from those issues, it is still true that for the first time maybe ever, I’m getting to just kind of go along and mostly do my own thing for a minute.

I’ve got stable housing, a supportive partner, a great dog, I live in a climate that isn’t killing me, and for the first time in my life I’m more or less earning adequate money to handle my expenses. I have to spend more of my time than I’d like every day running around satisfying the demands of capitalism, but we all have that. It’s pretty much just me, my guy, our doggo, and our art.

In some ways, it feels like my fantasy series and my life are both starting Book 3 at the same time. And maybe that’s why I’m not sure yet where it’s going to go.

It’s going, though. They both are.

Perhaps finally at something like my own pace.

OLYMPUS DIGITAL CAMERA