Careful. They're Carnivorous.

"I'm so sick of pretty. I want something true. Don't you?" (Encanto)

Oct 26, 2023

August 2023

When I call her back, she sounds like herself. But yet, I can tell. Little things are off. And a couple big things. She’s in the early stages of Alzheimer’s so there are…gaps. Glitches. Many of them are familiar because I have gaps and glitches. Mine are from TBIs.

Even so, we chat and laugh and catch up and it’s so wonderful because we haven’t done this in ages. We grumble about the neuro-crap that is now so familiar to both of us. When I had my big car wreck that caused the first of four brain traumas, she was one of the people who stepped into the vacuum left when the majority of my “friends” fled the sinking ship after they saw I wasn’t “all better” in two months. (We now call these “acquaintances” because we know better around here.)

There’s something about that two-month period. It’s a noticeable line of demarcation I’ve observed for the past 23 years.

That first time, getting dropped like that was a jarring shock. I’d never experienced such a thing before. It would not be the last time. So the fact that she made it through multiple of my lines of demarcation was a miracle of friendship. SHE is one of my miracles, a consistent companion and butt-saver.

Now she needs something from me. She sent The Emails earlier this year. You know. That round of, “I’m not sure how quickly I’m going to descend but just in case it happens more quickly than I’m prepared for, I wanted to tell you how much you mean to me while I still can.”

Today it’s a round of The Phone Calls when she’s lucid enough to think about it. My heart glows to be one of those people she needed to make sure to call.

She talks to me about this horrifying, grievous loss. This slow erosion. This ebbing—and then a flash! Sunlight! The brilliance of clarity!

For a moment.

I know those kind of moments. I have them. And when the clouds return…

Well, it’s a constant state of mourning. The constant reconstruction, brick by stone by slab by pebble with mortar to fill in the cracks of Acceptance. So those sunny days when you feel almost like your old self again are like breath to the drowning one.

Yet they also blow craters into walls. They crack foundations.

🎶 Every time you go…

🎶 Away.

🎶 You take a piece of me with you.1

So it’s also a constant state of repairs. Renovations. Patching holes. Finding the right-sized chunks to stuff into the holes. Sealing cracks. Placing buckets around the floor to catch the ceiling leaks. Placing hazard signs around the sink holes that have swallowed the back half of the living room, all of the patio, and the swimming pool.

Except the diving board.

Some days I bounce on the board, staring down into the abyss. Boingy-boingy-sproingy-boing… A seam of lava glows way off in the darkness down there.

Across the way, she stares at me from that corner of her own patio. The only corner that remains. Once upon that patio, she handed me clay pot after pot after plate—broken or cracked things to dash against the canyon boulders as I screamed and screamed and screamed. She said it always served her well when the pressure of her own disabilities became too much for her to stand up under.

That catharsis served me well, too.

After this many years, we don’t have to say much about this sink hole we both now share. We’ve shared other geological and weather phenomena. Artist droughts and locust plagues. That certain kind of avalanche that accompanies the fist of someone who swears they “love” you. Other types of lightning delivered by tongue and glaring eyes. This mutual knowing allows us to talk in code a lot, which she does. I fill in gaps. Her laughter is dark with, “Yeah. Exactly.”

But suddenly she gives a full body shake like a drenched dog deciding that enough water is enough. She pops herself on the nose and turns her back on the abyss, marching into her kitchen. I swing across the chasm on a thorn-and-rose laden vine, following her for some hot chocolate and those shortbread cookies she always has. I remind her that she doesn’t have to do that around me—suck it up, hastag-be-positive—and definitely not FOR me.

If she wants to do it for herself, I’ll grab the sugar bowl and the cream and carry them to the table, paying heed to nothing except that sunbeam shining in through the window. But only if that’s what she needs and wants most. Right now she would rather change the subject.

Unfortunately, she makes a misstep.

She asks me how I am. What I’ve been doing lately.

Kiss of death.

SURFACE PRESSURE

Anybody who knows me well knows not to ask those questions if they don’t truly and fully want the answer, but everybody seems to forget.

Until I respond.

Because if my brain is tired like it is right now, like it’s been for the past eight months of governmental hammering and health erosion, like it’s been since brain traumas 2-4 a decade ago, like it’s been for the past 23 years…

I’ve been tired since I was four.

Anybody who is my legit friend knows that my certain bonks to the head often make it impossible for me to spout flowers out my mouth in place of truth, and to paint hearts where my eyes should be.

If you ask me a direct question, there are many times when I can’t not answer you directly and literally. So if you are actually asking me, “What cool and fun and amazing and inspiring things have you been doing lately?” you can’t expect me to glean that nuance without limiting the parameters of your question. That was a skill I had to hack and spackle and force and hone as a kid to begin with, so having a broken frontal lobe and a faulty mouth-filter now?

She was there for the worst of it. She knows how bad it can get. My situation today is actually reasonably manageable compared to what happened in the aftermath of that car wreck back in 2000. It’s also not the first time I’m experiencing such a life-upheaval, so I tell her as briefly and quickly as I can.

Cliff notes from the edge of the abyss. Matter-of-fact. I mean…shrug…this is nothing new to me. I’ve been doing this kind of crap for a quarter of a century.

Fell down my stairs over Thanksgiving because my stuff doesn’t work right anymore.
Two weeks later: woke up having seizures because I had to evacuate my toxin-flooded house for 1.5 months. Had to air my house out in the depths of the winter’s cold snap. Hives, respiratory distress, more seizures, astronomical heating bills, uphill both ways, snow.
While holed up at my parents’ house over Christmas, my website platform sent me my next bill. It had doubled without warning. DOUBLED. I called to get a cheaper plan. They told me that this was not an option because the site consumes too many gigs. I asked precisely where—blog or site—so I could adjust it on my end. They refused to tell me. I asked to speak to a manager. Got booted from chat. Twice. So I had to embark on a fast-n-furious mission to find a new home for six years of writing. (Hi, Substack!)
Meanwhile: I finally collapsed into a celebratory heap of relief inside the financial safety net I had set up in the wake of that big car wreck. A safety net that I couldn’t access until I was fifty.
Alas. The safety net got rotted after 22 years in storage. A week after finishing the major construction project that finally got me back into my house, the net broke and I fell—eeeeeee! Splat. A government agency piled a boulder atop me. I got up with it balanced on my shoulders. A second boulder. I got up. A third boulder. Still getting up. Still balancing the load. Still trying to grit my teeth in my well-honed “Got This” grin.
(I mean, I was once a wife, an agented author-in-the-making, a multiple-degree black belt learning to teach children, and a Queen Bee who managed a tri-city dance community while traveling around the state, and later, around the world—yes, on permanent Dain Bramage.)
(Until the weight of it all collapsed me—shh!)
My eyelid has begun to twitch. I’m not being funny or metaphorical. Literally. It’s always an early warning sign. Then I start stuttering and failing to get words out my mouth correctly—an even worse sign. Flash-pan exasperation. Trouble understanding what people are speaking to me. Trouble comprehending what I’m reading and remembering it overnight. Okay. Fine. No more novels for me. That’s okay. I still have Substack.
Can’t quite feel the floor some days while I’m walking on it. Dizzy spells when I stand up. My skin goes crazy. My guts go nuts. I start smelling…weird. Not like me. Or rather…like me when I’m having too many neurological issues for too many months in a row. It’s a very distinctive scent.
Ew.
Friggin’ hate that. This is a really, really bad sign.
Shocker: my tooth infection comes back. For the fourth year in a row, no one will run tests on me because I’m a Medicaid patient and Medicaid patients don’t need proper diagnosing. We just need more random antibiotics and to STFU as we disappear. When I demand that I receive proper testing, I get siphoned away from my doctor, brought in on a Saturday morning with a very…ahem…interesting collection of people in the sparsely populated, barely lit waiting room.
I realize that I’ve probably been branded “crazy” or at best “hysterical.”2
Again.
I lose my ability to pass through the sunlight flickering through fall foliage without flinching and skull-itching. Police lights suck again. Strobes can fuck right off. So can that Marvel Movie opener. I’m having to survive on caffeine and adrenaline but all those antibiotics they put me on WITHOUT RUNNING A SINGLE TEST of my boils, sores, pus, and blood has messed up my digestion no matter how heavy-duty my probiotics are.
I get interstitial cystitis. Again. Coincidence? Doubt it. The first time I had it in 2007 I was also on chronic antibiotics because nobody could figure out what was giving me constant UTIs and kidney infections. (Short answer my massage therapist clued me into: too much dairy.)
When they finally run a few tests on me, they test things that are currently asymptomatic, but do not run the tests they said they would. They also record all sorts of mistakes in my medical history. (They still haven’t corrected them.)
I stand in the kitchen at the stove, stirring noodles. The pressure of my upper body and that little thing called gravity causes a micro-tear in my meniscus. You remember, that meniscus I almost tore a chunk out of. Almost gave myself meniscus surgery with one tiny skirt-flick in 2019 and then re-re-retore last year. I shift weight off the foot. It tears more. Minuscule. Microscopic. That means I better stop dancing while I’m on my feet. Okay, fine. Only physical therapy and floor-dancing. Groovy. I Got This.
A more powerful government agency steps in to assist the boulder-stacking project. This is the agency I literally built the foundation of my home upon. It’s the only reason I’ve had have a stable home for the past few years instead of having to move 5 times in 6 years against my will. (Landlords vs. mortgage, don’tcha know.) Apparently I need more donkeys in my life. One jackass too many is placed carefully atop the teetering pile of boulders. I grit teeth. I clench bunghole. I. Got. Thi—
The sink-hole collapses under my feet.
That’s okay. I know how to live in the Underworld. I know how to make things bloom down there where nothing should be capable of blooming.3
While I’m stuck downstairs, having blackouts, meltdowns, shutdowns, seizures, and laughing hysterically, a new boulder squishes me into the lava. It bears a message: my primary caregiver, my best friend in Arkansas—my beloved mother—has had a stroke. (The most common malady that kills off we Caerwyn Women.)
My elderly father, who now has to take care of her while trying to learn my entire disability rigamarole from the ground up and take on the job of driving me when I can’t, visibly ages in under two weeks.
I cut everything from my life except medical appointments, house repairs, government paperwork, brushfire emails, and the phone calls that put me under the table so that I can take the load off him and even help take care of my mom.
Shrug.
Honestly? It could be so much worse.
I know this firsthand. Been there. Done that. You probably have, too.

She really shouldn’t have asked. Today I can’t not speak literal truth. It’s not her fault. For someone with Alzheimer’s who is lucky to remember my name, perhaps even her own? No way I could ever be mad at her when I hear through the phone waves: her immense eyeballs have forgotten how to blink as she listens to me answer “how I am and what I’ve been doing lately.”

She ends the call really quickly before I’m halfway through my recap—before I can even get to the happy-crappy-enough ending with all that boulder-hoisting and the donkey juggling while balanced on the one glittery twinkle-toe I have left—

And she’s gone.

Crap.

Did it again.

I feel awful. I always feel awful when it comes up my throat like BLURP—SPLUCHHHTHHHK before my frontal lobe can properly plug the hole and paint pretty pictures out of partial-truths. Or at least just say, “Fine. Not much new around here.” Innocent whistle…

Wut? It’s technically true.

That night as I lie in bed, staring at my dark ceiling, it occurs to me that she only called me “Izzy.” She didn’t used to do that. She knows me more by my legal name than she does by my stage name.

Izzy.

The Grand Isidora.

Everybody’s Isadorable: Sparkly, shiny, energizer-bunny ball of RAWR.

She didn’t make that phone call because she needed to catch up and reconnect with ME, perhaps for the last time. She called to say, “I love you,” while she still can, and because, as she slides down the crumbling sides of the sink hole, she needed a dose of Izzy to see her through to the bottom.

I’d love nothing more than to give such an important friend a dose of the old Izzy Magic. I mean, it does still exist in here. Izzy is not actually dead, so now I feel extra awful, because that really might be the last time she ever has the wherewithal to talk to me.

(Isn’t that true every time we talk to anybody?)

To my relief, she leaves another message on my phone the next day. She doesn’t remember that she called me yesterday.

HALLE-FLIPPIN-LUJAH!

We embark upon almost the same conversation but this time we get onto the subject of teddy bears and stuffed animals. It is a sweet conversation and leaves us both rolling in stitches like so many of our old times together. She asks me how I am and what I’ve been doing lately.

I flash my Luisa Smile. I Got This.

I STFU.

Because today I have the Spoons to do so. Plus, before I returned her phone call, I took a nap, ate lunch, got some coffee, and did mental preparation to herd even more utensils into the drawer.4

Censorship Committee: Engaged.
Choke-Chain: Reinforced.
Bleep-Button: At the ready.
Izzy Mode: ✨Activated.✨

We have an amazing conversation. When she asks those fateful questions, I answer. (Sorta.)

I tell her about the dance project obsession that has taken over my life.5 (Shh, I leave out that I keep having to shove it onto the back burner and all the reasons why.)
I tell her about my excitement over putting my writing onto Substack and how fun it’s been. (Zip it: I leave out what prompted this forced overhaul of my entire writing life, how sporadic I’ve gotten beneath all those boulder-dropping donkeys, and why.)
When she asks how my health is, I shrug. “Pretty good, considering (everything I’m not talking about today, shh).” I chirp this semi-truth while blowing rainbow bubbles out my festering, sore-ridden gob and forcing a glitter-bomb out my pissed off bunghole.

I pray that she doesn’t ever remember our conversation from the day before when I was tired and caught off guard, because I’m overjoyed to be capable of CHOOSING how I reply today. I can’t always do that. And come on, this could be the last time I ever talk to her and I want to give her everything I have. Everything she’s desperately grasping for as she struggles to hold on.

To anything.

After swinging back across that sinkhole abyss, I grasp her hands in mine, squeeze, and flash her the most glorious, sunflower smile I have. Her return smile is like balm on my battered heart.

We bid each other a long goodnight. It actually takes us about five rounds to finally get off the phone, which makes both of our days. I sigh in bliss. Not one regret. I wish it could always be like this with everyone. I wish *I* could always be like this.

But I’m not, and I can’t.

WHAT ELSE CAN I DO?

“Can’t? Ohhhh, that’s a choice. You just need to practice more skills of mental fortitude.”

Ummm…pretty much all I do with cognitive therapy, thanks. When it comes to TBI and certain other neurological issues where you need your brain to regulate your brain? That‘s a really ableist statement. It’s the equivalent of telling a paraplegic in a wheelchair that the best way for them to get back into life is to pull themselves up by their bootstraps and stand on their own two feet. To just walk the walk. To keep runnin’ up that hill.6

It’s also unrealistic and a crappy thing to expect of anybody, or of ourselves to be our happiest, prettiest, most positive self all the time. I have no place in my life for toxic positivity. I’m a way bigger fan of silver linings and rainbows after the realistic acknowledgment of storms.

As an HSP neurodivergent living with TBI and C-PTSD, I’ve also had to get really good at apologies. And letting most people go.

Once that phone call is done, I’m wistful and purring, definitely sad for the decline and inevitable loss of my friend, but happy for the second chance at that conversation. I wouldn’t make a different choice in how I answered her, not in a million years.

Yet when I lie down in bed and the hush of the night comes over me again, so does that familiar diatribe.

“See how nice that was? If you could just do this with everybody all the time, you wouldn’t have lost all those friends. If you only danced happy and shiny and funny and inspirational, your career wouldn’t have tanked. If you would only write shiny too, you might be a Hashtag Real Author® by now and you wouldn’t have gotten banned for sharing your dastardly memoirs! You’d have communities you were welcome in. Maybe anybody in your family besides your parents would want anything to do with you, and you wouldn’t be such a millstone around Mom and Dad’s necks! Heck, Mom probably had that stroke because of YOU and what a burden you are to anybody who loves you! So you just need to pull yourself up by your Luisa bootstraps and get back to flinging perfect Izzy flowers and rainbows for everyone to ooh-and-aah over. That’s the only way something like you has any worth in this world. So put on some fucking makeup, paint on that Attitude of Gratitude, and actually BE WORTH THE AIR YOU BREATHE FOR ONCE because she did not call to talk to YOU. She needed Izzy! Nobody needs YOU. Nobody wants YOU. Izzy is the only one around here who is not a worthless eater, a parasite, and a pain in the ass.”

Don’t get me wrong. I love Izzy. I love being Izzy. It’s really friggin’ fun, and Izzy has the most fabulous costumes EVER. She’s a huge and important aspect of me. But Izzy is also a stabby little knife in my heart because most people don’t actually want the answers to the questions they ask me.

ME.

“OMG how do you dance with such deep emotion like that and what do I have to do to get some myself?”

Don’t ask me those things if you don’t truly want to know.

Because it ain’t how many dance drills I do or how strong my glut muscles are.

Many people have tried to convince me that The Izzy Thing IZ actually me. “The reeeeeal me.” That my disabilities and injuries and all their symptoms and all the battles and anger and the inexplicable strings of ill fortune that hit me like a storm surge from time to time are “not really me.” They’re just external circumstances and it’s the joyful, beautiful, glorious glimmering soul that is the “real” me.

That’s bullshit.

I am the glitter; I am the gore.
I am the inspiring, serene lotus in the middle of the sacred pool at the center of the garden; I am the motherfuckin’ moat monster.
I’m also the muck at the bottom of that pool you think is so pure and pretty.
It is.
AND.
I am the fortress walls and the portcullis of spears. I’m also the mangled carcasses rotting in the cemetery.
I am the one upon the ramparts, gazing at the stars. I also nock the arrows up there and pour down boiling pots of oil.
Those flames that ignite the tipped pot: totally mine. They shoot out my mouth on certain days. Out my ass on others. Still others, they boil that pot of tea we just laughed and chatted over.
I am both the horse flying across the open prairie and the one who rides her. The horse’s name is Love. I have four more in the stable, each with their own infamous names and yes, I ride them all.
I love my roses, daisies, lilies, and daffodils; I love my cacti just as much. Sure, they’re the flowering kind, but their prickles are worse than the rose thorns. And those snap dragons?

Careful. They’re carnivorous.

Sacred are the places to me where I don’t have to divvy myself up like unacceptable pieces of pie except for the Izzy Slice. I totally get it. I look at myself in the mirror every night and I read my journals at regular intervals throughout the years, so nobody gets it more than I do.

But in this time when I’ve lost all my Spoons and the Mask got smashed beneath this latest round of boulders…when I’ve lost the ability to hold back socially unacceptable words so now scads of people think I’m insane or just an asshole to be shucked…

In this abrupt chorus of crickets chirping in the night, I realized how many of my Spoons were getting devoured by my battle to maintain “nice” and “sweet” and “appropriate” and “socially acceptable” and “looks so good” and “doesn’t seem neurodivergent” and “doesn’t look Dain Bramaged” and “so inspiring” and “datable” and “fuckable” and “sustainable” and “sane” and “professional.powerful.pretty.perfect.”

Talk about carnivorous.

So now that I’m not expending so many Spoons in trying to maintain that pretty-pretty facade all the time, I really wonder…

What can I actually create? What else can I do?

What could you?

What I long for most is my lost ability to consistently CHOOSE. Eh. I work on it all the time, and I am always searching for a better balance between my Luisa and my Isa.

Good thing all the ME-NESS also contains a huge slice of exasperatingly tenacious, inventive, smart-aleck four-eyed nerd with some really fabulous skirts and a penchant for creeping about in places I’ve been told to keep out of.

So? Which Encanto characters dance and sing through your heart most?

Bella & The Beast

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