BEHIND THE VEIL: Hiding Things Underground - My Lindsey Stirling Journey 5
Continued from MY JOURNEY WITH LINDSEY STIRLING:
--THE MUSE IN THE MOON: A Thank You to My Muse & My Supporters
--BRAVE ENOUGH: To Fight in the Arena & Shatter Shackes
--TRANSCENDING INTO LIGHT - And Taking Flight
--LOST GIRLS - Rise Again. And Again. And Once More.
"Sometimes in order to discover all our potential, we have to take some steps into the dark before we can see the light, and that requires a leap of faith... At the point where I'm the most scared is finally when I discover the light." ~Lindsey Stirling (1-7)
Upon hearing that quote from the behind-the-scenes video for Beyond the Veil, I had to laugh, shake my head, facepalm myself. Because this is precisely the creative process I've been working with as I wrangle and wrestle with this post, as well as the two that have come before. When I set out to do this series, my intention was to provide some glittery glow and lighthearted inspiration before some of the stuff we'll be covering in the near future.
But I'm a dork. I'm very, very cute. Because how can I possibly tell you about my journey with Lindsey Stirling or why I have needed her music and her video-tales so badly without diving into this struggle with the Dark Side? I can't. So I finally had to step into a few of those places I've long been afraid to call out from the shadows and talk openly about.
Wouldn't you know it? The moment I surrendered into letting these tales be what they are, no matter that they're not only about soaring and overcoming and all the shiny stuff, I find my way through to where all of that lives after all.
"{Lindsey's Inner Child} takes me on this journey. She helps me make that leap of faith that I was too afraid to do by myself. She leads me through the darkness and then I begin to discover this {magical} world." ~Lindsey Stirling, Behind - Beyond the Veil
Photo by L.V. Bell
...And yet, as 2019 wound to a close, more magic abounded. I got a new awesome Voc. Rehab counselor, and I won another scholarship, this time to a writing conference focused on the business of being an author, rather than than the craft of being a writer.
I had my whole curriculum planned out. I was going to learn how to do this self-publishing thing from people who knocked it out of the park.
And I did. They were amazing instructors--the presenters as well as the other authors and my fellow students. Unfortunately, my brains also got knocked out of the park before the opening remarks of the conference.
That baffled me. Not six months earlier, when I had visited some of my oldest friends in Colorado, they had been astounded by the knee and brain recovery that had transpired through that tenacious battle to make it to Spain, even if I had to go through the airport in a friggin' wheelchair. When I came home, I could walk down stairs carefully. My stamina and clarity had skyrocketed. My sensory overload in crowded places had plummeted. For the first time in twenty years, I could tolerate strobe effects, police lights, and flickering sunlight through the trees while driving. I didn't know how to explain it except by one of those strange spontaneous healings. Mind over matter.*cue god-rays and angelic choir*
I went to that writers' event under the clueless ASSumption that I hadn't lost any of the miracle recovery. Nahhh, not really. That return to pre-seizure symptoms over the fall was just extreme stress from having a brandy-new Voc. Rehab counselor who'd never dealt with a Self-Employment Grant case, a brain-damaged client, or her government entity's horrific computer system that crashed, glitched, and did things like fail to receive clients' progress reports and requests for assistance. At the same time, I'd been hosting two longterm guests in my home, which always adds to the sensory overload.
But that was all done. The guests had moved into their new place, I'd been given a corrected deadline for my grant application, and I'd gotten an amazing new counselor. We were making progress at a pace I could sustain. On New Years' Eve, I even drove to a big event, danced through hours of LED lights, pulverizing music, and overlapping conversations, then drove home and did a mini-photo shoot as well as concocting some resolutions that are still in effect today.
After all that, I was fully confident about going to that conference to give myself another of those things that my entrepreneurial gurus said I needed: a new headwater for my multiple streams of income. Woot!
So my brain's reaction to the conference shocked me. It caught me completely off-guard, because this wasn't merely what I'd experienced and adjusted for at every other big event I'd attended or presented at since my big car wreck. This was over the top, and it happened the moment I stepped into that conference center jammed with hundreds of people talking over each other on the first morning before anything even got underway.
Brains: Rapid Shutdown Maneuvers.
Over the next four days, the firehosing did a number of things:
It put me under the table, drooling, barely able to speak, fighting seizures, and melting down, so I had to abandon the second half of the conference in favor of the blacked-out hotel room and the silent hot tub.
It reminded me how little people understand about TBI, neurological issues, and disability--and that many have little desire to understand.
It reminded me what limited capacity for genuine listening and compassion people have when they're caught up in All The Fun and some disabled chick is harshing their vibe because she needs to execute proper self-care while still trying to participate, if only on the fringes with ear plugs in. There were a few sweet souls who actually asked me why I was sitting alone at a table pounding out words when there was a lobby-wide party for writers going on not twenty feet away. There were many who didn't think anything of it, which is always a blessing. But a bunch narrowed their eyes and hurled chastising looks before moving on with their clump of friends. Then there were the ones who asked, but didn't listen to my answer. Instead, they voiced what those chastising looks had been saying all night: "We can write any time. I come to a conference to actually interact with other writers." Ummm...yeah. No shit. Lucky you, you get to do that without becoming Chernobyl. Unfortunately, few of my attempts to explain my no-see-em reality made a difference. I've found that this is usually because I "look so good." I swear, I should run around with one of those fake Halloween arrow-through-skull dealies, because people refused to accept that this wasn't antisocial lone-wolf syndrome or social anxiety that could be "cured" if someone took me by the hand so I could "be brave and jump in." Ummm...have you met me?! Oh. No. You haven't. You don't know that I'm actually a social butterfly and the Hostess With the Mostess when I have a full spoon arsenal. But they didn't know me, they didn't truly listen, so they refused to accept that this was about self-care due to a disability they couldn't see. After all, everybody has to Be A Joiner. If you're not, you're "unfriendly, a whiner, weird, creepy in the shadows." No-no, we all must suffer gallantly through the propwash with a porcelain smile of "just takin' one day at a time, keeping' calm and carryin' on and wearin' that happy-face, drinkin' the Koolaid." Or...you know... disappearing before the Mask cracks. But even that doesn't go over well, because then you're no longer a Joiner. It's a bad thing when you can't be a Joiner on scholarship, because some better-abled person could have been given your spot and actually put it to use. Plus, this was one of my lifelong dream careers with dream instructors and a whole conference center of writer-geeks I really wanted to be around. That's why I had chosen to be near-but-not-in-the-blast-radius instead of once again burrowed in the silent bliss of my prison cell--I mean, my hotel room. I had gained some spoons back while sitting there in that lovely, calming dark corner with my tea and my ear plugs, so I tried to jump back in. I tried hard. I failed even harder. Then I got lectured for it. A LOT, both during the conference and in the aftermath. Sometimes by people who were fully aware of my disability. Thankfully a few sensitive, gentle souls kept tossing me flotsam upon which to cling amidst the neuro-storm. 🙏✨🥰✨🙏
That conference reminded me (for the gazillionth time) that the absolute worst time to explain what I need for self-care is when I am symptomatic from too much sensory overload and too many people asking me questions to which they don't want the honest answers. "How are you? How's your conference going?" we all chirp in broken-record fashion, or worse: "How's your experience with the publishing world been?" Do you really mean it when you ask a stranger those things? I do. Over and over, especially when I'm yearning for friendship and connection, I forget that most people don't. Unfortunately, when I'm that symptomatic it requires too many spoons to censor my replies in a socially appropriate "awesome" or at least "fine" manner. It eventually reaches a point where I neurologically CAN'T answer with anything but the truth of how much pain I'm currently in or how unpleasant it is to try to participate in circumstances and careers designed for the abled. After the shitstorm that came down that first morning in the main conference hall, I had taken to pinning warning labels about my glitching self onto my name tag. They were humorous. They helped make the ravening Beastie approachable. They got the point across. I should have included, "Please, don't ask me the following questions--actually, you know what? Just don't ask me questions." Because NO. Me talking about this stuff is not an emotional choice when we get that far down the symptomatic hole. It's not a choice at all. At the same time as not being able to put the right words out in the right order, I also lose my verbal filter. I Think It; I Say It. So if you ask me the question of how I am, I will HAVE to answer you. Rest assured, my answer is rarely going to be shiny-happy while I'm waiting for the migraine meds to kick in or when I've literally lost the ability to speak. It won't be positive-pretty when I'm suddenly uncertain if I'm standing on the floor because my processing speed is buffering and a strange, surreal fog has rolled across the world for a few minutes. My answer won't be Polyanna Grateful when I'm trying to flee back to my hotel room through the deafening elevator lobby at lunch hour because an overload wave just left me wanting to claw my skin off and temporarily decapitate myself. I doubt I'll be terribly inclined to answer "how I am" with grace and eloquence when that flash off somebody's watch makes me want to scream like Pris dying for the next 3.27 seconds. It takes every spoon I have not to do that. On the Superbad days, I fail at that too, which is why I avoid, abandon, cancel, bail so often. I'd already done that for multiple classes and social events at this conference generously donated to me by other writers. By the time I slunk down from my room and crocodile-eyed in the corner with my keyboard, I had one night left to interact with these amazing people and world-class writers, so I let myself be lured up to the surface in the light to soak them in for one more moment. I mean, c'mon, I did desperately want to Be A Joiner, dammit, and I knew that I would be down the whole next day. In fact, I knew that this was my farewell party to the public writing circuit, so I pushed. Isn't that what "strong, reliable, professional, friendly, valuable, worthwhile" people do? Dig down. Be positive. Bootstrap it. Leave it all on the mat. Hadn't people been telling me that I needed to do that all conference? Hadn't they sworn that I was in a safe, welcoming, understanding place where I could "be myself?" Well, there's push and professional stamina, and then there's disability and health. The line between the two can be very blurry, especially when one's frontal lobe is collapsing. The more I tried to explain that to people who argued back toxic positivity to me, the more spoons got consumed and the more I lost the ability to self-regulate. I should have known within two minutes of sitting out in the lights and sound that I needed to tap out and go back to my hotel room. Because I don't know about you, but I prefer to confine the worst of my lovely symptoms to private locations, so I'm always on the lookout for warning signs. Alas, I don't always get them. Alas, sometimes the fog makes me unaware of them, especially when it gets compounded a special event I really-really wanted to participate in for the first time in seven years. Maybe a lot of the world has finally realized what that feels like after the past two years of closings and social distancing. But just like with a Covid quarantine, it's best when Chernobyl happens where there's nobody around to affect. Here's the kicker. Usually I don't get that lucky, because if I'm alone, I'm rarely being bombarded by the stuff that makes me Pris-out. So when I'm trying to set boundaries for our public interaction, explain my self-care regimen, pre-arm you with my warning signs, or explain what just happened when you saw me go down the Tidy Bowl of Doom, your guilting and chastising over my "negative attitude" makes everything 1000X harder. Worse still is when you aggravate it with your Overcomer's Raised Fist about the worst thing you've ever suffered--five years ago in a completely different, one-off life event, not a chronic condition you're currently in the midst of--"But you don't see me complaining and having a bad attitude. Look around you at this amazing opportunity you're squandering." Wow. Excuse the fuck outta me for not having badass neurology that can take being bombarded by 350 overlapping voices as well as yours does. May I suggest compassion? Empathy is always a good one. Or perhaps truly listening to disabled voices instead of waiting for the next opportunity to lecture and mansplain. Thanks.
These interactions and a few all-too-familiar discussions about my Gladiatrix novels with male writers confirmed that the world of speculative fiction still has many "penis-heavy" hangovers, to quote the Big 5 editor I once worked with.
The most inspiring presentation of the whole conference confirmed that I have been deftly dancing with my Dragons for a really long time, and that I need to stop giving two flying figs how many people tell me that I'm doing it all wrong because I don't "look good" on paper, on a bank ledger, or while I'm being blasted by environments that disable certain forms of neurodivergence.
I had some super awesome interactions with inspiring people who reminded me that IT'S MY FUCKING STORY. 🙏✨🤓✨🙏
Alas, the instruction and overall experience confirmed two of my worst and ever-growing fears: that I hadn't been miraculously cured of neurological issues, and that being a self-published author would be pretty much the same job I'd had to let go of as a touring, performing, un-agented dancer.
It is.
But on steroids, because the writing world is much bigger than the belly dancing world.
I did wind up tapping out that night and burying my glitching ass deep underground for the final day of the conference. After my late checkout, I dozed in the lobby with my earplugs back in so I would have one last push, then slunk into the main hall for closing remarks and teardown. It was quieter down there on the floor, ripping duct tape off extension cords. Stripping table cloths and organizing leftover swag, dishes, and personal belongings was a blessed, mindless way to Be A Joiner. Nobody asked me questions anymore beyond, "Hey, can you pass me those glasses from the next table?"
Absolutely, I could do that. But not for much longer.
My roommate and I skidded back to her house where I chanted, "She has no spoons left either. She has no spoons left either," and sought out dumb little mindless things I could do for her to demonstrate my thanks for driving me and sharing her hotel room with Pris Chernobyl. I don't have much memory of the trip after that, because I had fallen deep, deep into the Upside Down, and there is only one cure for that.
Silence. Sleep. Time.
Reboot. Recover.
Well, that was in February 2020, and I think we all remember what happened next. I was in the Denver Airport waiting to fly home from that conference when Colorado got their first confirmed Covid cases.
Ever since, I've been shedding and shedding and shedding. I've been diving and diving and diving. I've been asking myself a myriad questions and getting very few concrete answers. Mostly I get more questions and a bunch of hair-brained ideas that sound like a whole lot of fun. Things like:
What would happen if I did what everybody says I should do--if I give them what they say they want, but this time I don't care how they react, if they drop me, if they unfollow me, if they ghost me, if they disparage and ridicule me, or even if they threaten me with violence or death. Not my first rodeo with any of that. Because the Almighty They tell everybody, "Be yourself." They say, "Take down the Facebook Face and share what's truly going on with you. Don't wait until it's all through and then gloss it over or hide it. Be 100%." *chest double-pound* They tout and spout, "Be real. Show us what's beyond the pretty veil." Well, I've done that, but unless it has a Hollywood Happy Ending, or all the struggle is delivered with a "keepin' positive, got that attitude of gratitude" face, they don't really want to know what's behind the veil. In fact, they'll want you to go away and HUSH.
So what would happen if I did go away but I didn't HUSH? What would happen if I spilled all these beans I have stored in my old, rusty cans?
What would happen if I didn't do that in any of the tried, true, capitalistic, entrepreneurial formulas?
Could I decide to never sell another of my arts or gifts again? What would happen if I gave all the rough versions to the world and then croaked?
I dunno.
But it sounds a whole hell of a lot better than trying to do jobs and careers and Be A Joiner in ways that are uphill both ways in the snow with no shoes to who I am and how my neurology works. You remember what the definition of insanity is, right?
So I write. A lot. I dance a lot too, and when my carpel tunnel can tolerate that caliber of mousing, I even make videos of it. I pretend that I'm a gladiatrix in my studio and beat the snot out of air to badass music. I meditate about miracle healings while baking my neck on the Denner roll, and I do PT on and off all day. ALONE, in the blessed silence or the Muse-ic.
This pandemic gave me the gift of accessible trauma therapy so that knocks me askew and puts me back together once a week. This oral surgery and chronic tooth infection business knocks me askew every few months. Alas, too much sitting and sucking on my own blood is really bad for my joint and spinal injuries, so I get to routinely haul my splattered self back up the mountainside. Woot. I'm becoming really efficient at that. When that's not happening, I eat luscious (sometimes solid) food on my Walmart budget, go on artsy and woodland adventures that cost zilch, and brainstorm more ideas about what the heck to do with the time I have left in this body.
Sidenote: have I mentioned how much I miss regular crunch in my diet? I'm really jonesin' for that right now. Soon...
Last winter, I had those nine months of death dreams telling me that I didn't have as much time as I think, so I started abandoning even more "should" in favor of, "What would break my heart to have left undone if I died tomorrow?" There's not much. The bulk of it is writing. Well, Kyle said it way back in 1994. "You write more than you do anything, even dance."
Yes, I do. I simply haven't wasted my spoons trying to share it in all these myriad environments that are only in the past few years becoming (sorta) hospitable to #MyKind.
In the words of my favorite mythologist, Joseph Campbell, I'm "following my bliss." (8)
Y'all know how I am about mythology, fantastical locales, and astounding creatures. It's everywhere in everything I do, and this constant dance with Lindsey Stirling is no exception. The way she tells tales through music, dance and video imagery keeps me eternally inspired, album after album, story after story.
"...in order to learn to break free from the constraints we put on ourselves, and the constraints the world puts on us, I think it's essential to discover first who you really are... As a child you see the world with limitless potential and there's endless possibilities. I think as we get older we start to restrict ourselves, and our view becomes narrower. And so I find myself a lot trying to access that inner child and rediscover who I am, who I was when I was young and vibrant, and saw the world through those eyes." ~Lindsey Stirling, Behind - Beyond the Veil
Every time I dance or listen to Beyond the Veil, I always see the imagery from my journey into the Labyrinth where I was warned, “Beware the Minotaur”. This fantastical tale was based on a very real experience I had a few years after my big car wreck. If you’ve read it, then you know what I saw at the end of the ritual when I stepped through the mist to meet the Goddess Behind the Veil. You also know which intriguing shadows She led me into. ✨😈✨
This next one is for Joy, my TBI sister, who lived up to her name over and over again through that whole conference. It's for Mike, who just lets me show up however I am at these things. It's for Carrie, who always shows up, and never fails to brighten my world. It's for Curtis and Cody, too.
Most of all, this one is for L.V. Bell, my fellow fantasy writer geek, mythology nerd, dancer, organization queen, and spoon collector. She's suffered through too many of my cog-licious rough drafts, and trusted me with hers. She let me convince her that I was right about the dancer I saw lurking inside her, and she gets this Spoonie thing like few people I have ever met.
She was one of the many generous souls who made it possible for me to even attend that writers' conference, and she's the one who had to deal with the blast radius of Chernobyl when I caved to too many guilt trips and chastising comments, my overachiever Type-A push, and my yearning to be part of that world for just one last moment.
In an attempt to make sense of and find compassion for the parts of me that are Dain Bramaged and disabled, I once wrote a tale about a girl who rubbed the wrong genie lamp and didn't fully understand what she wished for. She also didn't understand that such genies possess diabolical senses of humor. In this tale, what happens to me when my symptoms reach Code Red and Code Black are represented by the girl's transformation into an Ogress at midnight of the dark moon.
My beloved Liv is one of the only people on the planet who has had the misfortune to meet the Ogress. It'll probably be easier for me to share that faerie tale with y'all than it will be to strip off the veil and give you the uncensored descriptions of what this condition does to someone.
The hardest thing for me to deal with is what it does to everybody around me.
That's why we wear the veils, Precious. That's why we don't live with other humans, and why we avoid going out into the world when we're symptomatic. It's why I have become so reclusive.
Because I need to strip off these veils. They've become too heavy. I need to let the beastly thing that dwells beneath out into the sunlight, in the hopes that maybe anyone could ever understand what's happening to themselves, their loved one, that stranger who terrified the shit out of them.
Me.
It's scary to let you see it. But it's better to do it this way, in controlled blasts rather than having that veil slip down when my hand is too spastic to keep ahold of it in public.
To everybody who helped me get to that conference, and especially to those who helped me get through it...this one's for you.
CHOOSE YOUR OWN ADVENTURE
--UP NEXT: BEYOND THE VEIL - Dancing with Shadows, Light & Lindsey Stirling
--OR: If you missed the series I had to take a break from before this one, it dives into how I started writing about a gladiatrix, and about being a female in the male-dominated worlds of martial arts and fantasy writing. It's a really messy can of worms, so I had to take a step back from its reeking guts for a bit. You can find those tales here:
--THE NAVIGATION TABLE OF CONTENTS
GROOVALICIOUS LINKS FOR YOUR INSPIRATIONAL PLEASURE
1) Lindsey Stirling
--The wiki
--"My Story" - As told by Lindsey, set to one of my favorite self-soothing, pick me up anthems: Anchor by Mindy Gledhill
3) Lindsey Stirling's new tour and album, Artemis
5) Atwood Magazine's interview with Lindsey Stirling
6) Lindsey's book, The Only Pirate in the Room - yarrrrrr!
7) My Spotify collection of Lindsey Stirling songs that make me dance and swoon. I admit, I'm a bit of a Lindsey purist, but there are a few collaborations that I adore. As we will soon see.
8) Joseph Campbell - Follow Your Bliss