Have the words changed since you read it the last time, Jian Qing?
Dear Disenchantment, always a comedian. I put down the letter that I’ve been compelled, for days now, to keep touching, keep staring at, along with the attached statement of benefits that seems as chimerical as the Fairy herself. The most critical piece of my disability-application ordeal has finally, after four months—the last month of which made me sicker than I was when I stopped working—been resolved.
I’m still fixing the numbers into my mind: this will be my monthly income for the next 12 years, and right now, it’s enough. More than I expected, even. I was never really sure of the amount, especially after taxes, but I did myself a service low-balling my estimate. If my Social Security disability application goes through, I might actually have income to save, or spend on a long-needed disappearance to…
Hello there! If you are still following this blog, you might like to wander over to its predecessor (and successor), The Fairy of Disenchantment, which has a new post! After my retirement from the workforce this fall, I decided there was still a need for a blog about literary therapy for MS, so the Fairy was the one I picked to revive. I am also still over on Instagram and Twitter @sunhesper (both places) which will become more important as the book nears completion… 🙂 Thanks everyone for reading!
It seems I’ve become a writer full-time. Though exactly what I intended to end up, one day, not at all the way I expected to get here.
I felt a need to come back to this, my first blog, because it is a document of how long I’ve struggled to balance work and chronic illness since my diagnosis with MS in 2010. Back then, when things were really bad (the first time), people close to me said “You could go on disability”. Unfortunately in 2010, or 2015, or even 2019, there was no way that could happen financially. If you look through back posts here, you’ll see a fair amount of agonizing around how much longer I could sustain working even part-time with my cognitive- and fatigue-related symptoms. What has changed…
The UNPRECEDENTED project is wonderful. It’s turned a really miserable period of time — and I don’t mean this year+, I mean the past several days — into something useful. Sometimes only the most brutal inspiration will get me to break past the barrier I make in my mind between visual art and written art and what I permit myself to produce based on some arbitrary assessment of self-worth. The point, the project presses, is simply to pass the time. And it happens to be a dark, damned time.
Tomorrow will actually be the Thirteenth Day of my journey into delayed-reaction-vaccine-induced MS misery, which has felt like traveling back in time to my first full-body assault by the disease. (This is not uncommon, and I’m not necessarily regretting vaccination but I really would’ve liked a little advance warning.) I have no idea how long I’m in for, but as of yesterday I can actually walk pretty well, so that’s something; we may be tapering off into the more tolerable end of the spectrum. That, I believe, is thanks to a new prescription for Baclofen… a Faustian bargain to be sure.
‘You’d be a great candidate for Invisalign,’ chirps the new dentist, and this takes me by surprise. The part about the wear on my molars, I knew. The stress to which I’ve been subjecting my perma-clenched jaws. But it’s the first time I’ve heard this recommendation, based on my ‘deep bite’. Something is changing for the worse.
The receptionist runs the estimate, hands it over with a perceptible wince. I choke at the sight of the out-of-pocket cost: $5000 with my useless, toothless insurance. I sign a form acknowledging my understanding of the unattainable. My condemnation to the dentition of my grandmothers. My mother, with a premolar gap she can’t afford to fill.
My hands shake as I sign. There’s a pounding in my ears, and when I briefly close my eyes, my vision is a warm, inviting, arterial red. No. No. I muzzle the instinct to lunge at the innocent receptionist. She smiles sadly, deaf to the shredding of my inner skin. I leave before the bones pop and the howling rage begins. It requires no moon.
I find a solitary place to writhe. Eventually, my mayhem unspent, despair comes to smooth down all the bristles, grind down all the points. A rabbit rustles in pouncing distance. Finches flit within my swipe. Aware that my prey is something other – and elusive enough to drive one mad.
The throat that matches my bite spans multitudes. And not knowing where to begin, I starve.
A little something different to amuse my Cool Cousin on his birthday; as he knows, I get my bite from more than my mother’s side.
An unknown age of ice fractures, attenuates all patience, stretches to the perfect limit of pain, disintegrates like sugar on the tongue. March rushes under. It has never stopped.
The last two lines of this poem came as a surprise to me. Why? Because when winter comes, I always feel as if it’s never actually left, just lain dormant. Like it’s a return to reality. Summer for me has felt illusory for a long time. Ignus fatuus. (My grandfather loved that term, discovered in the giant encyclopedic dictionary that was his daily reading where another man — at another time, before the death of his second child — had once read the Bible. “Ignus fatuus,” he’d say to me, apropos of nothing sometimes. And I’d supply the rejoinder: “Will o’ the wisp.”) And I’ve realized over the last several years that this is a survival mechanism, because Messers (as I’ve come to call people with MS) largely dread the hot months as times of misery — a flare-up of every possible symptom. It helps to view summers as temporary things. Which goes so against my grain I could cry.
I was born on the summer solstice and am by nature a creature of the sun. I am rampant in the desert, or on a sole-scorching beach. Or I should be. Once was. Whatever. Spring, though… What was it, before? The thing I tolerated, before my season started.
It seems that’s altered, since. And on a good day, it’s March, not December, that feels dormant — eternal. The bubbling up of water under broken glass, pushing apart the shatter so gently, and yet with such force. I won’t say I welcome it more than October, because my shadow-loving nature will always keen towards Samhain. But the flip side, kindled at Imbolc, is definitely powerful. And that’s a good thing… growth, I’d say, to more than tolerate a time of burgeoning.
First: wow. What an age we live in, when a man can go into the hospital on Monday morning, have a third of his right lung removed by remotely operated robots, be discharged the very next afternoon, and be walking around like nothing happened a day later. (This would be my husband, who has just been declared cancer-free, huzzah!) I’m still sort of coping with the sudden relative normality of life after a month of constant anxiety… but I’m not complaining.
Second: I have to admit, anxiety has been good for the book. Anxiety and connection, with both of my romantic partners. Mortality has that effect, and ain’t none of us getting any younger or healthier. I will say that it’s a wonderful thing, when you’re writing about romance, to feel like you’ve got a firm grasp of what you’re writing about.
I have at least seven love arcs in my book, running all across the spectrum from friendship to erotic obsession. And I tend to stress over whether the relationships are as realistic as they can be. One thing I’m keen to avoid is “instalove.” When I workshopped the first chapter of this story a few years ago, I asked for help in fixing that with my central couple, and I got some game-changing advice: if you make them already in a relationship, you can track back for the development at a more leisurely pace. Seems like such a simple solution now, to the point where all of my arcs are actually already in play. I have a favorite one, but it took a long time to feel like I got it right.
Nix, the brother of my protagonist Chalcy, is demisexual and (like all my characters in this world) very comfortable with his nature as it reveals itself over time. His relationship with Najet, a musician in the band for which Chalcy was a songwriter and Nix played violin (and also sewed costumes), is the slow-burn romance of the book. But because I have so many characters with SO MUCH GOING ON, there’s a limit on the amount of time I can devote to their story. A challenge, and I may not actually be pulling it off, but this couple is super satisfying to write.
This is just a little excerpt of what happens when they’re reunited after half a year — an epoch when you’re newly in love, and during which time they’ve been exchanging letters while Nix is leading a revolutionary movement a few hundred miles away. You should probably also know that Nix usually suffers from serious haunting by his ancestors, who’ve pinned their family hopes on him now that his even more radical sister is clearly never coming back to tend the family business. Tonight, however, which happens to be the first time he’s experienced physical attraction to Najet, the ‘mothers’ are mysteriously absent. (FYI: this is a matrilineal society.) Oh, and some vocabulary: ‘svai’ means sexual compatibility; ‘yasvai’ is the lack thereof, or asexuality in general. Taravi is one of four official languages in this civilization including sign language; code-switching is a way of life.
Nix must concede, as he’s divesting her of her stage clothes, that The Swell’s new tailor is quite good.
“But not as good as me.”
“Jikaro,” Najet pronounces, mock-disapproving. Pride, in Taravi, generally means vanity. But there’s a reverence in the way she undresses him in turn, her fingers lovingly tracing seams that she knows were laid down by his own sewing machine.
The memory returns to her, not half as distant as it feels, of watching him at work, on a set break backstage, quickly mending a skirt she’d torn when the lacy hem was caught under the stand of her bass. Breaking off the thread with his teeth and tossing the garment at her with a blithe, mildly intoxicated Good as new! Even half-drunk, Nix was better at such things than she was dead sober. What a match he would make, she thought, hearing her mother’s voice in her head (because gods knew she was miserable at the family lathe). And what a fool she was for abandoning that thought when she’d realized, standing purposely close in her knickers while he worked, that there wasn’t the faintest glimmer of lust in his eyes when he looked at her. Even when he’d reached out and put his hand on her hip, moving her an inch to the side, his boyish smile apologetic: You’re in my light.
Now, as his eyes caress her in advance of every touch, she feels as if she is his light. Mothers be kind, she prays as they sink into her bed.
Nix, for his part, has decided his ancestors have nothing to do with this seeming miracle. Nothing feels more natural than his instincts at this moment, and he finds himself thinking of something Ferruzadi said to him the night they learned that he could know pleasure without desire… but that he preferred a good massage. Yasvai has its own spectrum, you know? Svai may arise with some requisite condition or conditions – or it may not at all. Either way, it’s beautiful. You are as Karst made you. And Karst, apparently, made him for Najet Turner.
The one thing he wishes, with what’s likely to be his last rational thought as Najet’s soft-downed thighs encircle him, is that he might have had a little warning. The last time he took contraceptive herbs was years ago – and though there are different herbs for women, no honorable Coruscarian male would expect his partner to attend to such things.
“Where are you with the moon?” he asks. “I didn’t prepare for this, but we can be careful.”
Najet’s languid gaze clears with a blink. It holds him with tenderness for a long time before she speaks, cautiously choosing her words.
“Must we? Be careful? I mean… I think I’d be so happy. In that event.”
An unspoken question hangs on her parted lips. And it stuns him, how little he must consider his answer. Such a responsibility, now, would be madness. But all he can feel is longing, and all he can see are the faces of the children who take lessons with him in Sphene – the daughters of his apartment concierge. The shy perfectionist who reminds him of Chalcy. The brash, so-called unteachable one who reminds him of himself.
“If there’s a child,” he tells her, “I’ll come home, Naya. And I’ll stay.”
There is something Najet urgently wants to say to this. But it’s a long time… hours, hours of love and heat… before she does.
To think I didn’t even know they’d end up together at first! I find them very sweet and refreshing to write, compared to my main couple (Chalcy and Mica) who are so intense. Hopefully I manage to make them all believable.
Oh and there’s a third thing! The Chamber Magazine was nice enough to publish a little interview with me, if you’re interested in writerly process type things. (And they’re still accepting submissions!)
Now let’s see, what is the perfect Nix and Najet song… Ah.
My poem, “Sonata No. 6 (for Julian Scriabin),” was just published at The Chamber Magazine (thanks again to Phil Slattery for accepting it). If you are a wordsmith with morbid tendencies, I encourage you to submit your work!
I recently posted a video of the titular sonata, but there’s some good background on the piece on Wikipedia. I don’t recall precisely when I discovered Alexander Scriabin but it was in my late teens and I loved Russian composers as much as I loved Nick Cave and the Bad Seeds. When I heard No. 6 for the first time… it was a formative experience for a Goth girl. There was no Wikipedia then, but there were liner notes, and I was thrilled to discover that the piece scared the shit out of Scriabin too, and he rarely performed it.
It was many years later that I learned about Alexander’s son Julian, whose music you’ll probably never hear on NPR (though a few recordings are out there). Julian’s work, as you might expect from a composer who died when he was 11, bore many of his father’s hallmarks but was not without personality of its own. I have always wondered how it might have evolved if he had not died so tragically young in that “boating accident”…
I have to thank Jennifer Patino for giving me just the form for this poem. I hadn’t known tricubes were a thing before, and you can’t ask for a more apt frame for an ode to polyamory.
I’ve always hated the word compersion, which is largely unknown outside the Poly community. It’s supposed to describe a feeling of vicarious happiness when your partner is enjoying time with someone else. But it’s a product of the late 20th century and as much as I agree that 1) we need a word for this feeling and 2) we need it to extend outside polyamory (as people have argued compersion should do), I just can’t get past its problematic origins. (A word rooted in colonialism, repurposed by a white male cult leader is just never going to sit well with me.)
Of all the alternatives that I’ve seen offered, only one really speaks to me: the Buddhist term mudita. It seems to better capture the feeling itself: “the pleasure that comes from delighting in other people’s well-being”. It’s often used to describe parents’ feelings for their children’s happiness or success. I would like to see this level of desexualized joy attached to non-monogamous relationships, which are too often stigmatized in the popular mind. There’s something about compersion that makes it sound closer to compulsion than compassion – a kind of aberrance. Mudita has a gentleness that discourages judgement.
I think about the borrowed words English has for emotions and find it unsettling that almost everybody knows what Schadenfreude is, but can’t come up with a similarly concise term for vicarious happiness. Considering its proto-Indo-European roots, English could really stand to give a lot more love to Sanskrit and Pali. Or take more love from it, as the case may be.
I’m happy to announce that my dark science fiction short story, “Mother of Sands” was published today in The Chamber Magazine. (Kind thanks to Phil Slattery for accepting two of my works this month. The poem I mentioned in my last post will appear next week; a little more background will be posted here at that time.)
Here is a subtle soundtrack for your reading:
By the way, writers of dark fiction and horror, The Chamber is open for submissions — I’d love to see the magazine build on its strong foundations so far!
When I shared the news with my folks that I was going to have a poem published in The Chamber Magazine, and that I was excited to write a lot more horror and dark fantasy this year, she texted me: “I never really thought of you as a scary person. Congrats!”
I’m still smiling about that. What a delight to realize, after almost 50 years, that your mother’s greatest hope for you was that one day you’d become a scary person! And before you say that’s probably not what she meant… hah, you really don’t know my folks.
So if the past few weeks are any gauge, I think 2021 is going to be a creative year, as well as a difficult and painful one. This is, after all, why people write the macabre: life is the ultimate horror show, but at least on the page, you get to direct the shocks. To return, though, to The Chamber — if this is your jam, there is some top-notch writing there. I particularly enjoyed the article, “H.R. Giger: His Dreams, Our Nightmares”, by John A. DeLaughter; Hans, I’d have killed for just one dinner at your house. (Kidding! Or… well, it depends on who I’d have had to bump off. But seriously, the dinner scene in his documentary… These are my people.) Also, I’m very excited to see what Jennifer Patino has in her upcoming drop; her poetry is astounding.
My piece, “Sonata No. 6 (for Julian Scriabin)” comes out Jan. 22; I’ll post a link here then, but in the meantime, enjoy a little musical backstory. In the dark, if you dare. (Apologies to your immortal soul.)