My Types of Dissociation

I’ve realized that when I talk about dissociating, I can really be talking about a number of different experiences. So I decided to categorize and define some of the versions I talk about most often. This is just my experience, not universal; some aren’t even necessarily clinically dissociating at all, but, to me at least, have some kind of resemblance. 

Meditative 

This one resembles what some people call productive meditation. I experience it most often when I go on my morning walk, adding a repetitive, moving element. It’s not necessarily bad, and I purposefully invoke it for a reason. But, it’s like a form of dissociation to me because it can be very consuming and kind of hard to snap out of. Using the same ritual every morning helps me ease in and out of it at that time, but it can also happen—purposefully or not—at other times. I keep my route very simple, on small streets, and the same every day, because I can get pretty lost in my head for this, which is dangerous in other areas. It usually looks like I’m a little lost in thought, though it’s more like diving into an internal world entirely. It usually involves decision making, planning, or problem solving, whether it’s what I want to work on that day, what my next larger goal should be, or what I should do about (or if I should do something about) a problem. Ends more smoothly if I’m done thinking on the topic and have written down any takeaways for later, otherwise I remain very consumed by finishing my loose ends, or keeping track of those takeaways. 

Telling a Story

This one kind of feels like productive meditation, except it’s less so on purpose. It can also happen during my walks, pretty commonly on the swingset, and at other times. It’s not necessarily bad, though it’s not very productive, either, and again, consuming and hard to snap out of, though a little less so. This one involves mentally telling a story to a usually ambiguous audience. Sometimes things like blog posts are born of this, but oftentimes it’s random anecdotes (or a connected collection of them) from my past, or a recounting of something I’ve written/media I’ve consumed. It’s kind of like Drunk History, except sober, inside my head, and of personal stories or media. I get very sucked into the story. Often comedic, sometimes touching. If it’s a retelling of something I’ve written (or sometimes other media), characters may join in the narration. Sometimes I’ll laugh out loud, gesture, and make other matching expressions for this. Ends when the story ends, kind of, though it might loop or expand. 

Daydreaming

This is where the story actually happens. This one strikes me pretty much everywhere, on purpose and, frequently, not on purpose, and is probably the most frequent type. Not always bad, though I do write a lot of doom and gloom, angst and tragedy (and even more stays just in my head), and sometimes it’s not a great coping mechanism, a form of escapism. This one is especially consuming and hard to snap out of. The real world pretty much goes away entirely, and I at least see and hear (and frequently other senses) as if I’m a fly on the wall in my fictional worlds, or my characters. It often functions much more like a hallucination than a visualization (I also sometimes react in real time as if it is—my eyes track motion or mimic characters’ eye movements, so on—or go completely blank); most maladaptive daydreaming descriptions fit, but it still feels like… more. While arguably the most disruptive to my life, I wouldn’t give this one up for the world. As a fiction writer, this is where the magic happens. 

Thought Loop

When I get kind of stuck in a thought loop of some kind. This could be a general anxious thought, a ritual, or an eating disorder thought train. I really noticed this the other day while my wife and I were getting ready to leave the house. I realized that in the external world I was standing there, still, silent, staring blankly at nothing, long enough my wife was like, “… ‘Kay. I’ll go cool the car down.” It frequently looks like this, or you might see mumbling/counting on fingers, or actually doing the actions, sometimes anxiously. What was going on in my head, however, was mentally running through my leaving the house rituals. I have many rituals like this, for everything from leaving the house to cleaning the kitchen, and they have a hard time changing. I later explained to my wife that one bullet point I had in my head, for leaving the house, was the word dogs, which meant that I should give the dogs their treats before I leave. We don’t have dogs. This bullet point comes from when my mom and I lived on our own in a rental house briefly after my parents’ divorce, and I would give our two dogs some treats before I went on a walk to the park… eight years ago. At least one of those dogs is dead now, and probably both. Still, my mental rituals change on years of delay, with a lot of conscious work if I really feel the need to put it in, so, in that moment, I had to check gave the dogs their treats off in my head (several times, as I frequently go through all of my related rituals until I’ve reached something not checked off, do that thing, and then start over, then go through them like twice after everything has been checked off). This can be brief, but completely consuming, and I get much more anxious if I am pulled away from in it any way. In a way, I can’t function without this, but due to the rituals not being malleable, and how many times I have to go through them, it’s mostly unproductive. I’m currently trying to focus on having the important parts written down, and looking at those lists a reasonable amount, not going through old rituals in my head over and over. 

Blank/Zoned Out

The one where nothing’s going on in my head. You see the blank stare, and that’s actually all there is. I don’t get it a lot, and this tends to be a stress response, so it’s almost nice when it does happen, a reset to neutral, though it’s ultimately escapism. Everything goes away. I could live without it, and it’s not super common, though it’s often what people assume is going on when I get the blank stare. Completely consuming and hard to snap out of. Hard to do on purpose, and I generally don’t. Frequently goes with being nonverbal (or at least serious flat affect/monosyllabic responses) and/or catatonic. Frequently ends in sleep. 

Sensory Overload

Occurs when I’m in sensory overload. Not much is going on in my head typically—distracted attempts at escapism or coping, generally, or really, really trying to focus. I might look jumpy and distracted, frustrated, or somewhat catatonic (or be actually trying to escape the onslaught, closing my eyes, covering my ears, etc.). Could definitely live without this one. Less so consuming and moreso distracting, can’t really engage when I’m in it. Frequently renders me nonverbal. Never on purpose. Breaks only when I escape whatever’s causing the sensory issue for a while, usually after a bit of lag.

Active Delusion

Occurs when I am in the grips of a new/active delusion. Somewhat rare with meds and all. Most common subtype might be more of a depersonalization—like looking in the mirror, sometimes literally, often not, and thinking, Is that really me? The only thing in my mind is usually thinking through the delusion—sometimes leaning away from it, trying to logic myself out of it, other times, building it up, defending it, finding out what it is. I tend to be talking about it, very quickly, or possibly catatonic/nonverbal. Mostly not in touch with reality. Could definitely live without this one, too. Never done on purpose. Completely consuming, very hard to snap out of. Solved mostly by time and sleep. Delusions have been about anything from believing in the existence of magical notebooks to believing neither my wife nor my usual pharmacy existed.

Depression Urges

Rare, kind of. Occurs in phases. Happens when I feel extremely depressed, usually in a more anxious way. Looks like: desperately trying to self harm, or else very twitchy if I’m trying to resist, possibly trying to distract myself. Might do anything from laugh to seem frustrated. On the inside, there’s the obsession, usually racing and anxious thoughts, existential, that sound like depression. (The psychologist who gave me my diagnoses had a theory that I never had depression at all, only anxiety, and I see where she’s coming from when I examine what these thoughts look like.) Yeah, could live without this one, but it’s also weird to think about my personality without it, or without where it comes from, at least. Not done on purpose, though it might look like it; I’m not really me when it’s full blown. Consuming, hard to come out of on purpose, but I tend to snap out of it abruptly and within a few hours at most. If I do succeed in self harming, it stops, though it usually turns into something like Blank/Zoned Out. 

Hallucination/Flashback/Waking From Nightmare 

When I am partially consumed by something that isn’t real. This type varies wildly, really, but I couldn’t think of any further ways to break it down. Happens in phases, overall somewhat frequent. Not done on purpose. Might look anxious/scared (sometimes visibly shaking), distracted, twitchy/jumpy, staring at a certain spot, overall reacting to seemingly nothing, or suddenly zone out briefly and repeatedly. Could largely live without this one. I’d keep the dog, I guess. Partially to totally consuming, sometimes responds well to distraction, or will fade with sleep/time. I might be going somewhere else entirely (the dog’s/Farrah’s white void she hangs out in, the whole scene of my trauma, back into the nightmare) or seeing something projected onto the real world (corpse, dog, etc.) Could also involve other senses, especially auditory (voices, music, etc.) and tactile. Sometimes terrifying, sometimes amusing, sometimes just distracting or unnerving. I have another post in mind about most common hallucinations… 

This Is For…

This is for the people I shared seventy-two long hours with

We’d never met before nor would we ever meet again 

None of us wanted to be trapped within those white, white walls

Yet we were all hiding from something out there, too 

This is for them: the crazy, the broken, the silenced 

This is for the roommate I got on my second night, first full night

She was blonde, maybe forty, and if we weren’t in a psych ward

I think she might have been pretty

But we were

And she looked like death 

She was detoxing from a drug cocktail from nightmares  

And neither of us slept 

Since they had to check on us every five minutes

With lights in our faces all night 

The same drugs that got her here killed her boyfriend

But she was here to tell me the tale 

And we swapped our stories, and she said,

“Oh, honey, you don’t belong in here,”

And she told me I had things waiting for me outside these white, white walls,

That I should listen to my parents,

And if I wanted to write, then maybe I should write

(And I am) 

But no matter what, and I followed this advice, too, 

“Don’t touch drugs, and don’t come back.” 

This is for the girl with the dark, glossy, staring eyes 

That might sound bleak, but she was always smiling, giggling

Her mind was somewhere else, like mine

She was schizophrenic, too,

She’d been there a while, 

She told us in a group session that she fell in love with the boy only in her mind

That she believed he would want the best for her, even if it meant his demise

But she just wasn’t so sure she wanted to give him up 

And I told her I had friends only in my mind, too

And that maybe the ones we really love never truly leave us, real or not real 

And medication didn’t have to take that away from her

That he’d still be there if she wanted him, but only if she wanted him  

But so would the real world now, if she wanted it 

And later, I told myself that when I went back on meds, 

This thing I said first just to comfort her, 

But at that moment, she giggled again, and looked at peace, and said, 

“Thank you.” 

This is for the boy who talked nonstop 

He had a sweet, sweet car and a sweet, sweet girl 

He couldn’t wait to get out and see them both 

He told us this over and over and over 

And there probably was no car

And there probably was no girl 

But God, it was nice to live in his world for a second

He smiled every day over a breakfast a saint couldn’t eat

And didn’t mind that you couldn’t truly use the bathrooms alone 

He was a regular, knew all the staff’s first names

But didn’t look over at the sound of his own 

And he told us how great the world was out there

And I wanted to believe him 

And when they let us walk around the gray courtyard in circles 

For fifteen precious minutes 

Instead of hallways paced so much, all night, they put up signs

Telling you how many laps was a mile 

I didn’t go outside, because it was pouring

But he went, and he came back in, soaked, radiant

And I asked about the weather, joking, and he told me:

“It’s so beautiful.” 

This is for the one who tried to escape

I saw what he was doing

I cheered him on in my head and looked away,

Don’t give him away,

He crouched down low below the nurse’s station

And quietly bolted after someone into the locked room

The one with the elevators

But he got caught

And all I could think about was what I would’ve done

If I’d done it, made it to the first floor

No shoes, no jacket, no wallet, no keys, no phone 

They’d taken all of those things away 

I would’ve had only the same clothes I arrived in days ago 

I wondered if I could’ve blended in enough to walk out the hospital’s front door

And then gone… where? 

And I still ask myself that years later, 

And they asked him questions, right then, right there,

In that white, white hall that told you how many times you had to pace them 

To get to a mile 

(So many) 

And, bitter, he told them, 

“Well, it was worth a shot.” 

This is for someone I don’t know

It was one of us, it could’ve been any of us

But I got to borrow one of the hospital’s tablets

To check my school email

And feel like there was still a world waiting for me outside

And right there in the search history 

Was a question we’d all pondered

Yet I couldn’t bring myself to find out the answer

I didn’t want to be a tattle

But I didn’t want to have someone’s life on my conscience 

Even though I’d asked myself the same question 

And I remembered craving death

The way you’re supposed to crave oxygen

Every second without it throbbing 

I swallowed too many of my antidepressants once

I regretted it 

I liked to think there really was a worthwhile world out there 

So I told the nurses, just in case 

The person I didn’t know 

Had found the answer to,

“How do you kill yourself in a psych ward?” 

This is for the woman who was admitted after me 

I overheard them saying she had anger issues, she was delusional

That communication was hard, they said she spoke poor English

She screamed at them that English was her first language,

That they just didn’t like that she had dark skin,

That she wasn’t born here,

That her accent didn’t sound like theirs 

She liked to yell and throw and punch 

And I was stupid or brave enough to ask her what was wrong once 

And she told me she was mad at what the US government had done to her home country in Africa

And I told her that wasn’t so delusional, that she was right to be mad 

And for what it was worth, I wasn’t so fond of what they’d done to this country, either

And she took a deep breath and she told me,

“You seem sane. Don’t stop.” 

This is for the girl who liked to color with me in silence

We weren’t supposed to talk about where we came from 

But I thought I heard her slip and say something about Harvard

It was around midterm time, then, for both of us 

She had scars running up her arms that might scare the average soldier

But she made beautiful drawings, with or without lines to color in

And she doodled hearts over those scars until they faded away

She just missed her dog, and her mother’s cooking, 

And she had a little sister she was scared would turn out just like her 

She didn’t say much, but we’d sharpen our pencils under supervision together

With a cheap little plastic pencil sharpener from a back to school sale 

And I mumbled something about the times I’d taken one of those apart because 

I had nothing else to take out my self hatred with 

In the same breath as complaining about being watched,

And it was sad, unhinged, shameful, 

But what really made me not want to do it again 

Was when she looked at me with the expression she got

When she talked about not wanting to scar her sister’s wrists 

With her own self loathing, and she said, 

“Same.” 

This is for the people I shared only seventy-two long, unwilling hours with

Complete strangers, yet no matter how different we seemed from each other

We shared how much the rest of the world wanted to lock us away

And how much a part of us wasn’t quite of that world 

And we did better united than divided 

And if I have to be honest

They sure did me a lot more good than the doctors did. 

Tracking the I’ll Give You Series vs. My Mental Health at the Time

I wrote a post a while back: “Tracking Contrivance vs. My Mental Health at the Time,” an exercise in tracing changes in my writing versus changes in my mental health.

For this post, I’m doing it again, with the emphasis on the I’ll Give You series.

May 2020

It’s been most of a year since the whole “my father died suddenly at fifty-eight and I found his ten day old corpse in his house” thing. I seemed to be over the worst of the trauma response for a little while, but the pandemic struck full force two months ago, reports about overstuffed refrigerated trucks dominating the news. My grandmother passed just days ago at home in hospice care; I arrived just moments after her death to sit with family. 

I’ve spent most of a year buried in Contrivance, my dark, primary original fiction project of most of a decade, writing instead of sleeping. My fear of beds—too many bodies in too many beds, memory and flashback and nightmare and hallucination—is so bad, I’ve taken to sleeping on the floor in the loft (after scaring the daylights out of my best friend—now our quarantine roommate in the guest room—by unexpectedly sleeping on the couch, in the house we closed on the first day of March). I’m not on meds, and I’m Zooming my therapist weekly. The world is burning. I just got engaged.

And I need less doom and gloom.

The idea for a new writing project is slowly taking shape. Daydreams—erotic and otherwise—start to take real shape, the same characters, situations, themes, showing up again and again. I could use a distraction, a little side project. Maybe eighty-thousand words, I tell myself, a few months, one book. Just a detour while I figure out a few things about my real writing love, Contrivance. (It’s not you, it’s me. Maybe we just need a break.) 

I start hashing out character basics, scroll Zillow for setting inspiration, combining random ideas into a plot. I sit on the couch and talk it all out with my best friend, also a writer in need of distraction.

I’m taking an online writing workshop, and our prompt for a freewrite one day is company from out of town could mean trouble. I misinterpret it slightly—though the instructor stresses that it’s open to interpretation—and a plot is born, an enemy, a cause, an ending to the story. 

I start writing for real, and it’s like a dam bursting. I struggle with titles for a bit, but eventually settle on I’ll Give You Everything I Am (You’ll Give Me Everything I Want to Be). And I start posting it on Archive of Our Own to a silent reception for a full five chapters, because why not? 

July 2020

I am still writing like crazy—even winning Camp NaNoWriMo, writing over fifty thousand words in July alone—though I dropped out of the more structured writing workshop. (I finished a shorter one on dialogue, and I notice that this project’s dialogue is much more relaxed, natural, than in Contrivance, something I want to take with me to my edits.) I’m also picking up a bit of an audience, which is exciting, and a little nervewracking—I’ve never really written erotica before, not even something centered on romance. 

I’ve also picked up two tricky, additional main characters, whom I battle with—they want to throw grenades at my plot, and I would like them to go away and leave my three-month, eighty-thousand word, one-book side project alone. I retcon them out of past chapters where they’re not strictly needed only for them to pop up again, more significantly, later, until we’re seriously throwing the word polyamory around. 

I’m spending a lot of time at the park, on the swingset in triple digit heat, listening to music and trying to figure this project out. Who on Earth are these two, and where do they fit into my beautifully simple, tiny project? 

And so Jen and Clara are born. 

Meanwhile, my mental health isn’t going so well. I’m hallucinating regularly—mostly Dad, dead, and, of all things, a mysterious golden retriever puppy named Farrah. I’m catatonic for hours at a time, occasionally delusional, and generally a mess. 

I also start this—The Schizophrenia Diaries—because I sure have mental health things to talk about. I’m still maintaining my older blog—more alternative sexuality education—too, and that’s now picking up attention from my erotic fiction audience. 

My therapist thinks I should go back on meds, but I can’t even get in to my old psychiatrist.

Everyone is a mess right now. 

August 2020

I’ve accepted—mostly—that Jen and Clara exist. In Chapter Fourteen, Clara tells Lalia a story that just begs for more, about a time she ran away. In the middle of the night, in the dark, I fire up a new document and title it bluntly “The Night That Clara Ran Away”, a title which oddly sticks permanently, and has a few more stories titled in something like parody, like the later “The Night That Clara Just Wanted to Sleep.” 

So I begin writing companion stories. 

September 2020

I’m back on meds, and it’s mostly great. I’m sleeping at night, and all but bouncing with energy during the day. I stop seeing my therapist. My best friend moves in with my mom, and I get my own swingset in the backyard. Vaccines are on the horizon, my wedding is in two months. I’ve been posting Contrivance bits on their own website. A neurologist rules out the idea that I’m having seizures.

In that process, I’m required to do a sleep deprived EEG. So I pull an all nighter. My appointment also happens to be right after Yom Kippur. So I start fasting at sundown, sleep, fast for about twenty-six hours total, eat dinner, and then stay up all night, snacking, and have my morning appointment and then a full afternoon and evening, for a total of thirty-eight consecutive waking hours.

If one wasn’t psychotic at the start of that, they would be by the end. 

And, y’know, I was schizophrenic to start with.

In the middle of the all nighter, I create a Discord server to chat with myself, figuring out I’ll Give You plot bits. In that crazed night, the plot of what becomes Book Two—by now I’ve accepted a Book Two is coming—is born. 

November 2020

I get married. It is one of the best days of my life, and another one is close on its heels. 

I finish what I now acknowledge is only Book One of what I’ve started to call the I’ll Give You series/trilogy, and, for fun, have a few copies vanity printed for me and friends. But now that I’ve put all the formatting work in… why not self publish? 

So I do. It’s surreal, to hold a published book that arrived in the mail, with hundreds of pages, a real cover, a summary on the back along with reader reviews, a dedication page with my wife’s name on it, and my (pen) name on the front.

Yeah. My quick little side project, indeed. 

To my shock, people even buy it.

December 2020

Encouraged, I start posting Contrivance in the same manner—serially, in order, as a book, on Archive of Our Own. It doesn’t get quite the same engagement, which is funny to me—Contrivance is still my precious baby in a way, not the I’ll Give You series, but that’s okay. Sex sells. I accept that. I’m also accepting I might actually know something about these things I’ve been writing about, and schedule my first classes as an alternative sexuality educator.

I think I’ve just about got things figured out—I know how Jen and Clara fit into my no longer so simple plot, I know how I like to post things, I know how self publishing works, I know what has an audience, I know what’s coming in Book Two—and then, Clara tosses another grenade. 

She has an eating disorder. Anorexia, specifically. Well, mostly recovered, but it’s been there this whole time. 

And… it has. It’s there, all right—in every time we see her interact with food. It’s there, every time she might want a coping mechanism. It’s there, in the way she looks in the mirror, in the way she lives in the dance studio, in her penchant for self destruction. It’s there, in the former perfectionistic, traumatized teenager without a mother. It’s been there. 

So I do some research, and I make it work. 

February 2021

This whole writing companions thing is kind of out of control, and now there’s a book’s worth of them, and I publish The First IGY Companion as almost an accident. 

I’ve started teaching webinars, I’ve started going to butler school. Other areas of my life are picking up—not just hunkered down writing. 

May 2021

I take a little staycation, a few day writing retreat alone at a nearby hotel, using rewards points that we got to keep through the pandemic.

I don’t take care of myself well, though, too lost in my words. My mental state spirals, and I self harm for the first time in many years.

My wife takes me home early, and I recover quickly.

July 2021

By now, I’m running Las Vegas TNG, a local alternative sexuality group, and I publish Service Slave Secrets (Volume One), the first years of my blog on the subject, to a nice reception.

Book Two—I’ll Give You Everything I Want to Be (You’ll Give Me Everything I Need to Be)—is flowing, as everyone unpacks their issues in and out of therapy.

I try going off my meds briefly, gradually cutting down with the thought that I’ll stop when it starts to affect my sleep, as that’s the easiest way to measure the minimum dosage. However, my sleep doesn’t really suffer, but I abruptly realize, five minutes overdue for the first dose I’ve totally skipped, that I’ve been absolutely miserable, and can’t hear my own thoughts over the music hallucinations I mistook for a song stuck in my head, among others. 

I go back to the full dosage that night. 

November 2021

Several months into the “health kick” that’s taken an especially dark spiral recently—hint hint, healthy diets don’t include this much purging and fasting and overexercising—I accept that I have an eating disorder—all of the symptoms of anorexia, not quite underweight—and start the cycle of on again off again commitment to recovery. I don’t need to weight restore, but this cycle has got to stop. I start to talk about it with the people close to me, and write a post in which I theorize about where it came from: 

Clara. 

It’s been almost a year since my abrupt realization that Clara had an eating disorder, and I am now detangling my thoughts and hers. I write a post on this—the dangers of writing a character with a disorder I don’t have, as a schizophrenic author with a very fine line between character and self

At some point in my research, the tables turned. Now I’m writing backstory companions to pour what my head sounds like onto paper—this many calories eaten, this many hours left to fast, this many pounds, BMI this, BMR that, that many minutes of exercise—thoughts that weren’t mine when I started. 

I write about how I took an online eating disorder assessment as research early on, and got a very safe, normal score. Now, though: yup. Something’s not right. 

Which came first? Was I already developing disordered eating habits, projecting them onto a character until I couldn’t deny it was me anymore? I’m convinced that the character’s disorder came first, but we’ll see. 

Incidentally, I finish and publish Book Two. 

March 2022

I publish The Second IGY Companion along with Contrivance in the same week, having recently finished my first (posted) AU for the I’ll Give You series: “Let’s Not Be Star Crossed Lovers”, a short multichapter of alternate backstory. 

I’m also finally learning to drive, which is always an emotional roller coaster. 

Book Three—I’ll Give You Everything I Need to Be (You’ll Give Me Everything I Am)—continues on. 

It’s certainly an interesting month. I’m still bouncing back and forth on the eating habits, now with my wife’s help supervising three meals a day for a while, starting to sort out my disordered thoughts around food, focusing on the fact that skinny seems to represent productive for me, and that I’m actually more productive if I just eat.

August 2022

Book Three is still in progress, flowing along. A few companions have gone up, but they’re slowing down, and I’m thinking of editing them into a future edition of The Second IGY Companion rather than creating a third. I have at least one more AU going on in my head to write. 

I got my driver’s license, I’ve gotten into hiking, I’ve started donating plasma, and I’ve started a Little Free Library. I’m still writing—blogging, including my newest blog, A Productive Hannah—and a brewing sequel to Contrivance. I’m still teaching, running TNG, going to butler school, being a housewife, looking to reinvest as a landlord, including a day trip to go scout out a different city. 

I publish Service Slave Secrets: Volume Two, breaking my personal royalty records.

My mental health bounces around a lot, even though my external life is going great. 

We’ll see how it goes. 

Wish you’d seen this a week ago? Get access to all of my posts one week early here.

July 6th

Today marks the three year anniversary of discovering my father’s death, and it’s the little things, really. 

I try to fall asleep the night before the anniversary. My wife types on her computer in the other room peacefully. Here, it’s dark. I know, I just know, that if I roll over, face the even darker spot, I’ll see the corpse there, behind me. And my body shifts uncomfortably the way it does when you just kind of want to roll over, but I ignore it. Nope. Not today. It’ll be there. I know it. 

But, like a child told not to peek, I can’t help myself. I glance behind me. Within the split second, shadows take on shapes—an arm here, a leg there. No. I turn my head back, heart pounding. I can still feel the maggots on my skin, but only on my back, and I know, I just know, that if I glance again, they’ll be everywhere, everywhere, everywhere

In the morning, I almost forget, somehow. I have WiFi and cellular turned off at first; my laptop is off off; I haven’t adjusted the building toy like number blocks in my little Wizard of Oz calendar in my office yet, and I almost forget, somehow.

I’m tidying, when I come across the notecard I left out for my wife last night. Among other reminders, I’d added a dry, Happy birthday, Farrah. 

Farrah—my schizophrenia tamagotchi, my recurring golden retriever puppy hallucination, who I think represents the part of my brain that wants to stay psychotic, creative, free of reality—let me know—in the way that imaginary dogs let you know things, like when you realize something in a dream—last year, that July 6th was her birthday. The anniversary. She’d appeared for the first time around the one year anniversary, with the collar whose bright red color hovered over it, with the name tag I saw as a mental flash that read Farrah for reasons I still haven’t figured out. So the timing was about right. 

But what do you do for an imaginary dog? I try to telepathically beam her some imaginary biscuits, in the bright white void stored in my brain I imagine she retreats to when she’s not out here with me, projected onto the real world.

I whisper it out loud. “Happy birthday, Farrah.” 

…  

I don’t own a lot of memorabilia items at this point. But one of them is the purple dress. 

I think it’s noble, to keep it, really. I mean, you can’t just donate cursed items to Goodwill, or let them run free in a landfill. Some innocent child could find that, Jumanji style, you know.

I was wearing the purple dress when I found my father. I was wearing the purple dress when I scrubbed my hands raw next door. I was wearing the purple dress when I scribbled a police report. I was wearing the purple dress when the coroner said, “You look really young.” 

I only wear one thing at a time for various reasons, and at the time, I was wearing that dress, for about a year. It was a simple v-neck, short sleeve, knee length dress. I owned it in many colors. When even the color choice seemed like too much, I cut down to just the green, because it was my wife’s favorite, because it brought out my eyes. I wore just the green dress for another year.

During that year, my grandmother died. When the end was coming—weeks after the beginning of a pandemic—I headed over to her house—the one I’d scrubbed my hands raw in, written the police report in—wearing the purple dress, and having packed other colors, because I didn’t want the rambunctious dog in the house to ruin one of my current, green dresses. 

Grandma was unconscious, had been for a while, and I’d said what needed to be said, made my peace, but I was ready to simply be there, as I told my mom when I was heading there.

Grandma died while I was in the car, driving there from my house a mile away. 

I wear something else now. I donated all of those old outfits eventually. Except for the purple dress. 

I think I’ve grieved my father twice, really. 

I remember this dream I had in which my best friend died. It was a form of a PTSD dream after my father did die, and the striking thing about the dream wasn’t the death or the gore—there was none; they died off screen, so to speak. I was worried about them, in the dream; I was at a family party, and many people who are deceased in the real world were with us without question, but I just kept noticing their absence. They were on their way, from work, across town, which they usually commuted to via electric bike. But they were late. 

In the dream, I finally thought to check my phone, to look for them on Find My. Even though it wasn’t real, I’ll always remember the way my stomach sunk when I saw their phone’s location was a funeral home. They were gone. It was being processed as evidence. 

The dream, after that, was a montage. Days, weeks, months, years of unimaginable grief. Talking to their parents. Going through their things. Therapy.  Anniversaries. Grieving. 

I woke up with a lifetime of trauma I hadn’t endured, of grief for someone who had never died. 

I did the same thing with my father, in a way; I grieved his death once before he died, in the waking world. In a way, I grieved him when my parents divorced and I went with my mom, too—just his presence. 

But, the grieving his death.  

It was October 2nd, 2017. I woke up in a dorm in Cambridge I wouldn’t live in long and checked my laptop half awake. By the time my eyes opened fully, I was in the hallway, desperately searching for someone who could help me, even though no one could. 

The news.

It was everywhere.

Deadliest mass shooting in American history.

Blocks from home. Blocks from home, thousands of miles from where I was, pleading for help. 

My father wasn’t a big selfie kind of guy, but he’d sent me one just two days before. Working this stupid country music festival all weekend, he’d texted, grinning widely for the camera in a spotlight basket high over the ground. Behind him, Las Vegas Boulevard. Behind him, a window in Mandalay Bay. Most haunted image I’ve ever seen. 

No. 

It took hours to get a hold of him. In those hours, I lived a lifetime of grief. I worried for almost everyone I knew, remembering how to breathe every time someone marked themselves safe online, then forgetting again when I realized how many people hadn’t

I forgot to breathe sometimes for weeks, until I landed in a psych ward, and then, finally, back home. 

Home, where my father had been, fast asleep. 

He had, impulsively, taken that night off. 

… 

I don’t watch TV, really. But not long ago, I got the urge to rewatch Wall-E. 

I didn’t get far. But I thought about the movie a lot.

Dad loved Disney. One of the last texts I ever sent him, one of the few that sat on his phone, undelivered forever, after he wasn’t there to see it, before I realized I was texting the void, was that my then girlfriend, now wife, had finally seen Wall-E. 

She was drunk, after a friend’s housewarming party, and to sober her up, a friend and I sat her down in front of the TV we owned back then, with food and Gatorade and Wall-E, which is, I must say, still captivating, darkly beautiful. It has no real dialogue for most of the movie, but there is so much story, and new things to look at every time you see it. New items grab your attention from the endless landfills Wall-E explores (but there’s no cursed purple dress). It’s probably good to watch drunk, but I’ve never been drunk. 

Dad loved Disney. He loved Wall-E. The movie, the adorable robot. So I told him that she’d finally seen it, because he considered it a crime otherwise. 

He never heard the news, though.

Mom and I talk sometimes about the things we wish we could say to Dad, to Grandma. We’ve both made our peace with certain things. Do we really need to say I love you one more time? No. It’s, I finally found the water shutoff we were always looking for, or, She finally watched Wall-E, like right after you died. Also, we’re married now. By the way. 

… 

Today.

Later, my mom takes her car in for a tuneup, and I give her a ride home. We talk about the date. I lit a candle for your dad. Happy birthday, Farrah. 

We stop before I continue on to my house, and we get out of the car to hug. 

And I appreciate every moment we have together, but today, especially, I hug her one second extra long and one squeeze extra tight. I go home and hug my wife one second extra long and one squeeze extra tight. 

And, for the people you love, I really hope, today, not tomorrow, you do the same. 

June 2022 Update

While this isn’t really a journal blog, more of a related essay collection, given the diaries name, I do like to give an overall life update every so often as something like a general what is my life (as a schizophrenic) really like. 

So, the first half of 2022.

  • Had several wonderful holidays. Birthdays (I turned twenty-four in January), Mother’s Day, New Year’s, Valentine’s. Took a lovely birthday staycation with my mom in a local hotel.
  • So much writing. I published two books (in one week) this March! My longtime dystopian project Contrivance: The Devisers and Their Secrets, and the latest installment of the I’ll Give You series, The Second IGY Companion. I also launched a new blog in April: A Productive Hannah (productivity essays, especially about the whys and philosophy of it, especially for those who don’t fit the typical productivity mold). Posted a new standalone short story, “What Happened Last Storm” (also April). And, kept up on my usual projects. 
  • Lots of teaching. I taught twenty-two webinars, including one for my first conference (also in April), on being an ally to alternative sexuality practitioners with psychosis, and several for awesome venues. I also added three new classes to my repertoire (including one on productivity) and two new on demand only demo videos to my educational website. I was also interviewed on a podcast for the first time in February.
  • I’ve been making progress on butler school. Currently on Module 10 of 22, and learning a lot. 
  • I learned to drive! I finally got my license this month, and my wife and I also bought a new car that is easier for me to drive. 
  • We sold the rental property! Closing was in April. Now looking to reinvest. 
  • Hosted sixteen events for Las Vegas TNG (a group for local young adults interested in alternative sexuality), and launched the group’s Discord server in March. 
  • I got a membership at a coworking space I’ve been loving and getting so much done at. Started going occasionally in April, got the membership in May. 
  • I upped my housewife game, did various home improvement/organization/deep cleaning projects, watched the plants grow, and did all of the usual homemaking routines. 
  • I renewed some of my certificates from courses, and got my ham radio technician license (March). Read thirteen books (some relevant favorites include Hallucinations by Oliver Sacks and Girl, Interrupted by Susanna Kaysen). Drastically changed my handwriting (January—slightly more legible). Added a bunch of yummy recipes to my repertoire. Did a lot of crafting (sewing, crochet, other). Started making my own soaps (June) and started drawing (January). Practiced aerial silks. Managed and improved my health and continued with my psychiatrist. Got into hiking (June). 

It’s been a bit of a wild ride, but mostly, good times.

There’s lots of exciting things coming up in the second half of 2022 as well. I’m definitely looking forward to July and beyond.

Sundowning, and Daydreams vs. Hallucinations

Recently, I read The Productivity Project by Chris Bailey. It’s a great book, and it emphasizes managing your time, attention, and energy. One of my key takeaways was to stop fighting my natural sleep patterns, to shift my schedule, and go to bed and wake up a little later, like my body wanted. 

However, this meant sacrificing the hour of writing I had scheduled early in the morning, before brunch with my wife. This didn’t feel like a huge loss, though. I frequently didn’t get much done in that hour, when my body wanted to be asleep. I had to fight for every word, and it wasn’t actually when most of my writing happened. 

So, I looked to reschedule my official writing time according to the book’s principles, figuring out when my energy naturally peaked. Except I realized that I didn’t want to write at that time. I wanted to write when I had less energy, when the daydreams that fuel my fiction are sleepier, more like full dreams. I wanted to write at night, perhaps right before the daily dose of my antipsychotic, when its concentration in my body would theoretically be lowest. But not in the morning, too tired to get words down at all—which also sometimes happened at night—when my daydreams were too hazy, not vividly dreamlike. 

I ended up not structuring my writing time via strict daily timeblocking at all, for now preferring the flexibility of a monthly goal, the ability to separate sleepy, creative, psychotic daydreaming/brainstorming with pen loosely in hand and the part where I actually get coherent paragraph after paragraph down on paper. But it was an interesting observation. 

I more recently started reading another book: Hallucinations by Oliver Sacks. From that, I learned about sundowning—a behavioral phenomenon that occurs in people with Alzheimer’s and other conditions. It involves symptoms of confusion and distress that start around sunset and continue through the night. It can also cause hallucinations and occur in people with psychosis. 

I found that interesting, as someone who had recently expressed a preference for at least brainstorming at night—because my semipsychotic daydreams ranged closer to full psychosis at that time. Even more so than in the morning, when my daydreams didn’t seem to have the same grip despite my initial theory of low energy being the important part. I also pondered the stereotype that writers are night owls. 

Additionally, I’ve long struggled with determining what my daydreams are. Just a bit of creative type syndrome? Maladaptive daydreaming? Part of my actual psychosis? I’ve had a lot of creative type friends, though, and my daydreams don’t work like theirs do, much more all consuming; reality goes away entirely, not picture in picture. They fit well into the maladaptive daydreaming category, but I still feel like they go a step further; I don’t only struggle to control compulsively slipping into daydreams, but the contents of them also slip out of my grasp. Thus I have always defined them as semipsychotic, though they also don’t fit the way I describe my more typical hallucinations. 

But in reading Hallucinations, I stumbled across something else: the difference in eye movements between seeing, normal and maladaptive daydreams, hallucinations, and dreams. While your eyes tend to scan real areas and track real motion, most people’s eyes go still—glaze over, zone out, if you will—when they are visualizing or daydreaming, unless maybe it’s something very dynamic, or if it’s scanning a visualization of certain kinds of information. In maladaptive daydreaming, this is also common, though some people sometimes truly act out the daydream, usually reserved for private situations. The eyes move—while eyelids are closed—when dreaming, during the REM (rapid eye movement) stage of sleep (current research suggests this is part of processing new/changing imagery, not scanning visuals in dreams). 

When hallucinating, the eyes often move as if seeing something real. This has been studied a lot in terms of Charles Bonnet syndrome (visual hallucinations connected to loss of vision), as it has interesting implications about the difference—or lack thereof—in seeing versus perceiving

So I tried a few informal experiments. I asked around, watching as others visualized/daydreamed, and asking what they saw when I did, and a few times, I sat in my office, left a recording Zoom meeting with just me in it open on my laptop in front of me, and sank into my daydreams, then watched the recordings and what my eyes did. 

While I had no dramatic behaviors to note—I didn’t fully act out the dream, and didn’t do anything consciously—my eyes, always open, definitely moved. Remembering what I’d been daydreaming about, I noted that they sometimes tracked motion within the daydream, from roughly the perspective of the point of view character (all in third person, but kind of flipping back and forth at times the way the camera does in a movie)—following a character scrambling away in a chase. Or, my eyes acted out the way the observed character’s eyes darted back and forth looking for a way to escape. Different bits. 

But this helped confirm for me that my daydreams might go a bit beyond, and I was clearly able to observe that they did so more at night, in a way that made sense as a form of sundowning (among other evening symptoms—a heavier leaning towards more typical hallucinations, mood symptoms, dissociation, PTSD flashbacks, hypervigilance, the negative symptoms of schizophrenia, catatonia).  

It can be very beneficial, validating, to find the word for something, a more objective way to look at it, to find out that other people do it, too, even for phenomena I had already casually observed. 

So, I was glad to come across these things. 

Want to Know About Schizophrenia? Ask a Schizophrenic

Recently, I taught for my first conference. In advance of the event, an organizer posted class highlights—the details of a particular class offered at the conference—regularly on social media. The comments section was usually quiet, maybe positive.

As it happened, one day I stumbled across a class highlight where the comments section wasn’t going so well. It took me a second to realize that the class highlighted was mine. 

My qualification was questioned, despite being in the post. It was a class on being an ally to alternative sexuality practitioners with schizophrenia. My qualification was being an alternative sexuality practitioner with schizophrenia. 

The organizers had stated in many places that the conference presenters were mostly not mental health professionals. Most of us taught from our own experience. More was explained in the comments section. I didn’t know the commenter, so it wasn’t personal. 

So why was I the only one who had this issue? 

Probably: I was teaching the only class at the conference about psychosis. 

The commenter cited that one could do a lot of harm, responding to psychosis without knowing what one was doing. And that’s very true—that’s a main reason I teach that class. But that was true of almost any subject at the conference. What I saw implicitly referenced was the seriousness of psychosis, or rather, the stigma. Even within a class list for a conference on mental health and alternative sexuality.

The stigma particular to psychosis is real. 

But, okay, let’s go with it for a second. 

Does having schizophrenia make me qualified to write and teach about it (at this level)? 

Yes. I think so.

Why? 

Because, while it’s subjective, I can tell you what schizophrenia feels like from inside it. Because all medical literature and research on schizophrenia relies on people like mebeing studied. Because even the average mental health professional can’t give you first hand information on it. 

Now, any diagnosis alone does not give me clear communication skills, or knowledge of the hard science, or so on. It just gives me experience to speak from—an experience that science studies and documents en masse, trying to figure out why, trying to figure out how to treat it, along with the physical tests and so on. I get other skills and knowledge from practice and research. 

But I am qualified to talk about the first hand experience. Psychosis is in large part about your relationship with reality. Therefore, my perception of reality—versus others’ perception of reality—at any given time, is half the picture.

You might see someone standing in the middle of the street, yelling and beating themselves with a lint roller until they bruise, or someone curled up motionless on the floor, staring at nothing, or someone calling an invisible dog and holding nothing like it’s a leash, or someone vibrating in terror while fixated on an empty space in a bed, but I’m living something else. 

I’m feeling the world crash down around me, I’m off in another world with my characters, I’m trying to get the whining dog to cooperate for once, I can see (and smell) the corpse in the bed. And that’s a lot of context, and only I can fill that half in for sure. 

Any mental illness, really, is, by nature, hard to get the full picture of from an external perspective alone. 

And many schizophrenics struggle to share their perspective—it comes with the territory. On my bad days, I can’t share mine. On other days, thankfully, I can. 

But ultimately, if you want to know what schizophrenia is really like? 

I’d ask a schizophrenic.

How to Be an Ally to People With Schizophrenia, by a Schizophrenic

(This is heavily based off my class “Schizophrenia in the Scene”, on how to be an ally to alternative sexuality practitioners with schizophrenia. I’ve adapted it as a blog post for a more general audience.)

So: how to be an ally to people with schizophrenia, in several contexts, by a schizophrenic.

Psychosis 101

It can be hard to be an ally if you don’t know the basics. So let’s go over a few things.

Psychotic Disorders

First, let’s look at some of the most common types of psychotic disorders. We’ll go over some more specifics in a bit.

  • Schizophrenia. Schizophrenia is probably what you think of when you think of psychosis. It’s the disorder I have. Symptoms include hallucinations, delusions, and negative symptoms. While the average onset is the late teens to early twenties for men and late twenties to early thirties for women, my symptoms officially appeared around the time I turned fifteen, and I was officially diagnosed at seventeen: early onset is possible, but it’s extremely uncommon to be diagnosed under age twelve or over age forty.
  • Schizoaffective disorder. Schizoaffective disorder is a disorder with chronic symptoms of both schizophrenia and a mood disorder (either bipolar—with manic and depressive episodes—or depression).
  • Delusional disorder. Delusional disorder (formerly known as paranoid disorder) is defined by the presence of delusion, though they don’t usually have as many behavior symptoms. While hallucinations may be present, they are always related to the delusions.

There are other types of psychotic disorders, and other disorders that can have features of psychosis. For example, schizophreniform disorder has all of the symptoms of schizophrenia, but only lasts one to six months.

Types of Schizophrenia

Within that first diagnosis—schizophrenia—there are several subtypes. Here are some of the most common.

  • Paranoid. This is one you’ve probably heard of, and it’s the kind I have. It’s defined by unreasonable suspicion and paranoid delusions.
  • Disorganized. Disorganized thoughts, speech, and behaviors. These symptoms tend to appear in all kinds of schizophrenia, but especially here. Thinking may feel complicated, and speech may come out as word salad, or gibberish. People with disorganized schizophrenia may have strange physical quirks or a lack of certain mannerisms at all, or mirror the person they’re with. Hallucinations and delusions tend to be less pronounced.
  • Catatonic. This type is defined by catatonia—appearing to be in a frozen, statue like state (silent, still, staring, etc.) I’ve also experienced this episodically—primarily early on. Or, you may experience random hyperactivity (fidgeting, mirroring the person you’re with).

(Note: I’ve seen that the correct phrasing has technically changed from, say, paranoid schizophrenia to schizophrenia with paranoid features. So bear that in mind, but I’ll say I’m not super fond of that phrasing. As someone with a lot of catatonic symptoms at times, I used to say things like paranoid schizophrenia with catatonic features. So what now?)

Symptoms

I’ve mentioned many symptoms above, but let’s dive into what they really mean.

  • Hallucinations. Hallucinations involve seeing, hearing, tasting, feeling, smelling, generally sensing something that isn’t there. While hearing voices is commonly referenced, hallucinations can involve all senses and also include object distortions (think Alice in Wonderland), and be more or less vivid. You may feel like you generally hear “background noise” or see a few extra shadows. You may or may not know you’re hallucinating. I experience all of this, and also have recurring hallucinations, such as one from my trauma (intersecting with PTSD), and a golden retriever puppy named Farrah. It’s a mixed bag.
  • Delusions. A delusion is something you believe that isn’t true. You may believe that someone is out to get you (paranoid) or that you’re actually someone famous (grandiose). You may not believe it in full—just have it as an intrusive thought you can’t get rid of—or you may believe it entirely. I tend to have these episodically—usually triggered by a change I’m not expecting, like an object not being where I expect it to be, or vice versa—and generally be paranoid.
  • Disorganized speech and behaviors. As mentioned, disorganized speech—word salad/gibberish that may sound coherent to the speaker, but not the listener (sometimes coming from disorganized thoughts) or going nonverbal—and disorganized behaviors (freezing, fidgeting, staring, flat affect/monotone, mirroring/parroting) can occur as part of psychosis. I experience these at times, especially when I get too tired. A lot of these also cross over with autism for me.
  • Negative symptoms. Negative symptoms are a lack of usual functions. This can mean executive dysfunction—struggling with normal self care, jobs, study, and activities. This can also mean flat affect and social withdrawal. This can also mean a lack of ability to feel joy or interested in something. I also experience these, up and down.

Treatment

So, if someone is experiencing psychosis—what now?

  • Medication/antipsychotics. The front line treatment for psychosis is medication. You cannot truly treat psychosis with counseling or therapy alone. Medications designed to treat psychosis are called antipsychotics and come in many forms. With a psychiatrist’s supervision, you might try several before you find the med(s) and dosage(s) that work best for you, keeping an eye out for side effects. I take my antipsychotic med as a pill at night (it also helps with sleep). Other meds might be useful, and antipsychotics can also treat nonpsychotic disorders.
  • Therapy. Therapy can still be useful to help cope with psychotic symptoms and any other issues or disorders. For meds and especially for therapy, the key is to get the right one. Get the right medication (or combo), and the right therapist. Not every therapist is someone qualified to treat schizophrenia, someone you’ll get along with, or even very good at all—some can actively make things worse. I’ve seen many. Make sure you find someone qualified who you like and you think really helps you. It’s not necessary, but it can be very valuable. I was in and out of therapy from 2012 to 2020. I’ve been out since, but have considered going back if I could, well, find the right therapist.
  • Psychosocial approach. This is a therapy like approach that focuses on functioning in the world with psychosis, including family education and counseling, social skills training, occupational therapy, help with accommodations at school or work, and being as independent as possible (transportation, housing, etc.)

Interactions

Now that we’ve covered some basics, let’s talk about how to interact with someone who experiences psychosis, whether they’re talking about the experience or struggling right now.

  • First thing’s first: don’t assume you’d know if that person experiences psychosis. Don’t invalidate them by saying things like well, it’s clearly not that bad or no, you don’t. They would know better than you do. Also, stay away from lines like oh, I wouldn’t have guessed—it’s not necessarily your business, and that may or may not actually be a compliment; it can sometimes feel invalidating that it’s not apparent. Framing it as a compliment that it’s not apparent can also be a form of shaming the invisible symptoms. Also, don’t assume that the person is high functioning, not struggling, or even having a good day just because they’re having a nice interaction with you. You don’t know what they’re going through. I get this a lot as someone who passes as “high functioning” most of the time.
  • Don’t treat it as extreme. Psychosis is often seen as the deep end of mental illness. While there are some valid reasons for it, don’t use this as an excuse to be othering. It doesn’t always feel great when someone says “you can even live a normal life with psychosis” or makes a comment to someone else like “at least you’re not psychotic”.
  • Don’t stereotype. Not all people who experience psychosis experience it the same way, to the same extent, or are the same person, or feel the same way about it. Don’t lump everyone in together, and don’t throw things under the psychosis label that have nothing to do with psychosis, like certain political beliefs.
  • It’s not a magic power. Please, do not tell people who experience psychosis that it’s a magic power, a religious calling, a spiritual experience, that they’re psychic, that they can see the future, the past, things you can’t, another lifetime, just—any of it. If it belongs in a house of worship or a science fiction/fantasy novel, just don’t say it. It can lead to an acute psychotic episode and fuel delusions and hallucinations. Whatever you believe, please keep it to yourself in this case.
  • However, keep in mind that not everyone thinks their psychosis is all bad. I’ve written before on why I wouldn’t cure my own schizophrenia if I could, and view it as a crucial part of my creative work. Don’t force this as toxic positivity onto someone, but don’t necessarily go, “Oh, that must be so horrible, I’m so sorry,” either.
  • Be aware of common psychosis triggers. As mentioned above, religion/spirituality/science fiction/fantasy kind of elements can be a big one. They also might be a special interest of that person’s—I love talking about those things at times—but tread carefully, ask first, and if they’re not up to it that day, they’re not up to it that day, even if it’s their favorite thing at other times. Other things: conspiracy theories, anything reminiscent of The Matrix or Inception, any “it was all a dream/simulation” etc., absurdist humor (“Cat? I don’t see a cat,” when there’s a cat right in front of you.) And if they ask you to stop, do it right away. Don’t continue on with the subject. Don’t try to explain it. Don’t apologize over and over; it puts the burden on them to keep interacting about this subject. Move on. It’s probably already a little late.
  • Stay neutral on delusions. Don’t confirm them—they’re not true, and this makes them harder to shake. It also makes you a known bad source of information if that person comes out of the delusion later. Don’t deny them while the person is in them—this will just lead to frustration and confusion. Stay neutral. “I understand you think that.” I’ve had delusions that the person I was talking to didn’t exist/was a hallucination. I know it can be hard to stay neutral, but it’s always better to nod and smile and stall a little if need be than to take a side.
  • Reality checks (and why they probably don’t work). Look, trying to reality check a hallucination is much more complex than you think it is. First, you’d have to check all five/more of your senses. Check every single thing affecting those senses in the environment, every object. Check if all of those things are oriented properly, the correct size, color, texture, distance—you get the idea. “You see the glass, too?” “Yes.” But it’s a completely different size to them. Flash of light? Well, maybe you just missed it—or maybe they’re hallucinating. “Can you touch it?” Well, yes, sometimes visual and tactile hallucinations do line up. This tends to be a powerful instinct for people—reality checking—but proceed with caution. One yes to, “You see X, too?” doesn’t mean the person is necessarily psychosis free. (Life hack: noise cancelling headphones = auditory hallucination check.)
  • Say what you mean. On both sides. Remember that words mean different things to different people. For example, my wife and I discovered that when she said, “I’m tired,” she meant she had the vague urge to go lie down and rest. When I said, “I’m tired,” I meant that I was a few minutes at most from blacking out/was a fall risk/”Catch me.” That can be a pretty important distinction for a word people use all the time.
  • Person-first language. Person first language (ex: a person with schizophrenia rather than a schizophrenic person or a schizophrenic) is commonly praised as a good default. And it is. But if it’s not that person’s preference, it’s not that person’s preference, and you should respect that, just as they/them are good default pronouns, but once someone tells you their preferred pronouns, you should use their preferred pronouns. And beware of clearly awkwardly rearranging a sentence around first person language, making it a bigger deal than it is. Think of this: if you wanted to say I was a writer, you’d probably just say, “Hannah’s a writer,” right? You wouldn’t clumsily tiptoe around Hannah is a person who writes, because it’s no big deal that being a writer is part of my identity. But psychosis probably trips your “I should use person-first language for this” button if you have one of those. But why? Are you deciding for me that it’s not part of my identity, or that it shouldn’t be something I identify with? Tread carefully here, and use the preference of the person in question.

Events/Groups

Considerations for event planning and social groups.

  • Be honest (about your scope). If you’re running anything that calls itself a support group, a safe space, a mental health/illness space, therapeutic, things like that: be very honest about what you can actually support. If you say you welcome all neurodivergent people, remember that it covers anyone who’s not neurotypical, not “anxiety, depression, autism, bipolar, ADHD, trauma”. If you’re not actually equipped to handle someone with psychosis—just be honest. It’s much better for me to read in advance that an event or group is not meant for me (in a non judgmental way) than to show up and get all of the mistakes from the section above, which are very common in groups that are just not prepared.
  • Sensory overload. For people with psychosis and many other mental illnesses, sensory overload is a real thing at events. Consider adequate, non flashing, neutral lighting, a quiet space with limited background noise, a lack of strong scents, etc.—or at least a space at your event where someone overwhelmed by those things can catch a break or socialize more easily. In the case of psychosis, sensory overload can also start with sensory experiences that only that person is experiencing—what might not seem like a lot to you, could be the straw that broke the camel’s back.
  • Physical safety. If there are steps, loose cords, things like that, in your event space, where your usual recommendation is watch your step, or things that require being very cognizant of your surroundings—see if there’s a way you can make that safer for those who might not be so easily in touch with reality. If I’m dissociating, I’m not watching my step. Or, objects may be distorted or hidden by hallucinations. Maybe a spare shelf can double as a ramp on a step or two down into a living room pit, or you can tape those wires down securely.
  • Privacy. If someone reaches out to you about being a group member with psychosis, keep it confidential unless they explicitly tell you otherwise. Just because they’re telling you doesn’t mean they’re “out”. Be willing to talk about related concerns privately. At an event, places where guests could get a moment alone or with a trusted loved one are very welcome if someone needs a minute to calm down.
  • Reach out. Ask what you can do to make your event more accessible—with the opportunity for private answers. Without being pushy, reach out to group members who have been quiet lately; maybe they just need a nudge or a reminder that they’re welcome.

Relationships  

Considerations for family, partners, close friends, etc.

  • Advanced (mental) health directives/power of attorney. These are documents that (at least where I am; there may be different versions available where you live) outline the healthcare you would like to receive (or not) in advance, and who can make decisions for you if you cannot make them for yourself. Consider adding people you trust here.
  • Emergency contact. Adding trusted loved ones as your emergency contact(s) at work/school/etc., and vice versa. Also, keeping a card in your wallet of your important medical information (medications, conditions, allergies, etc.) and emergency contacts (name, relation, phone number) can be a life saver. It has gotten me out of a bad situation where I was nonverbal or catatonic more than once.
  • Subtle “help” cues. It might help to establish a way to cue them in to the fact that you’re having a problem, if they can’t generally tell/you can’t always communicate that with normal signs. It could be a subtle way to signal for help in public (or a visual in a loud room), a hand signal for if you’re nonverbal, so on—or different ones with different meanings.

I hope this information helps out a little.

Vacation Memories, or Not: Early Signs of Psychosis

When I was fourteen, my mom and I took a trip to New Jersey. We visited family and friends, saw some sights, all that good stuff. It was a great trip in a lot of ways and I have fond memories of it. I reminisced about it to my wife recently, and I recalled two things I frequently think of from that trip that go beyond vacation memories and into Things To Ponder territory.

One:

It was a several hour long flight to get there, and to be honest, I don’t remember much of it, but it meant a lot of transportation downtime, which means I was probably doing a lot of daydreaming. Many of my best plotlines and revelations were born of this kind of time. The earliest born recognizable plotline from the final version of Contrivance (which I published recently) was born on a roadtrip to California for my wife’s job. Another important revelation, same project, on a roadtrip back from a Lake Tahoe vacation with family and friends. I reframed “What Happened Last Storm” on the way to San Francisco (which was reposted recently).

Anyway, after the flight, I believe we went straight to visit my grandparents, the primary reason for the trip. And after that is the part that I remember clearly. Let me tell you this: there is not a single left turn in the state of New Jersey. I am sure of it. I am pretty sure we had to go to New York to turn around after missing the (okay, one) left turn to get to our hotel. So it was a long drive.

Apparently fresh out of the usual daydreaming material, my mind began to wander further. Daydreams started to wander a little too far ahead of my conscious thought train, and I abruptly slammed on the mental brakes. 

Where did that come from? 

The daydream train had deviated from what would ever truly be canon for the nascent project. Into vaguely uncomfortable territory I couldn’t really identify at the time. It was far from a sexual fantasy or anything, but something about it had the flashing warning light of don’t think that. I’d now file it somewhere in the alternative lifestyle category. But I’d barely even heard those words at the time. And, interestingly, a lot of my daydreams already went into what I would now call that category, going as far back as I can remember, to my earliest memories. So why was I suddenly worried at that moment? Doing the same plotline with new characters? Fledgling awareness of the taboo? Or increased paranoia? 

I believe the important thing isn’t the content of the daydream—honestly, I don’t remember the details—but the slamming on the mental breaks, the don’t think that. Thought policing myself. I stopped daydreaming and sat there in the car and pondered that. Why was I policing my own thoughts? Did I believe others around me could hear them? That some form of God could hear them? That bad thoughts inevitably led to bad actions? (There’s also probably a whole post’s worth on why did I instinctively feel that content was taboo while barely understanding it?, but that may be better suited to my other blog.) 

I decided, sitting there and reasoning with myself, that I supposed there wasn’t a reason I should police my thoughts. And I indulged the daydream and mentally crept forward. Still, I found myself slamming the brakes on daydreams like that under various circumstances. If I was alone and someone entered the space, I slammed on the brakes, like abruptly closing embarrassing computer tabs when you realize someone’s standing behind you. So on. Now, I wasn’t very good at the brake slamming—that’s kind of the maladaptive part—but, I tried.

This whole thing resonates a lot with—well, a) maladaptive and dissociative daydreaming perhaps over the edge of psychosis in itself, but I talk about that going back to my earliest memories a lot here, but also b) paranoia—as in, paranoid schizophrenia, one of my eventual diagnoses. That paranoia—the thought policing—creeps in to this day, though I have so few secrets these days, even if I believe someone can hear my thoughts, I don’t actually worry about much. 

Here’s the interesting thing: I had only in the past six months or so, at the time of the trip, been diagnosed with so much as anxiety. I had no known psychotic symptoms at the time. When I started on medication for the anxiety, my dad even reacted badly to the first prescription recommended, because it was technically an antipsychotic. He thought this whole thing was already getting out of hand. I’d gone from “a little too stressed out” to “psychotic” in no time at all in this psychiatrist’s eyes (even though it’d been explained that the psychiatrist understood I had only anxiety and was giving me this drug to treat me for anxiety and sleep, no matter the primary use of it). Point being, I was not psychotic at the time. Or, so we believed? And I was early onset as it was—definitive psychotic symptoms around the time I turned fifteen, diagnosed at seventeen. The average onset for schizophrenia in women is the late twenties to early thirties. 

But some of my symptoms do go further back than even my anxiety diagnosis (which, to be fair, may have been long overdue). 

Exhibit two from that trip: 

My mom and I went to the Museum of Natural History. I hear it’s a really cool museum. Here’s the problem: I have no memory of it. 

I remember going into NYC from New Jersey. It was my first time on a subway, all that fun stuff. I even remember arriving at the museum and I believe having food in the cafeteria. Then my memory cuts out. Then, we’re standing on the front steps of the museum on the way to meet a friend of Mom’s for food. I am having a panic attack because something went wrong on the camera and it deleted all of our many photos of the experience. 

Now, that sucks for both of us and all—but I’m long over that part—I was just prone to such panic attacks at the time. (Sorry, Mom, for all of it.) But the interesting thing is I remember insisting that because there were no photos, it was like we hadn’t been there at all. I was already struggling to recollect details that had seemed very clear a moment ago. My brain insisted that no evidence meant that it hadn’t happened. The museum wasn’t quite real. I don’t think I expressed this very well, though. I didn’t even understand that anxious thought process at the time. I don’t remember what my memory of the museum was like closer to the event—I remember losing details as we walked away from it—but today at least, I’ve got nothing. I’m okay with that. A lot of memories fade, anyway. One day, I’ll go back. 

Now, today, if after very obviously living an experience for several hours, I lost the external evidence of it and spiraled into panic, thinking that the whole thing had never truly happened, I would probably think I was having an acute psychotic episode, and might even be able to articulate that. It would indicate an obvious loss of a sense of reality, unable to grasp the realness of something I had just experienced. A loss of permanence. Today, I frequently use photos to keep reality real, so to speak. They ground me and provide facts. 

When I’m so consumed by the image of my father dead that I can no longer picture him alive, photos ground me. Photos say, This is what he looked like. I may or may not be in a mental state where my perception of the photos (selfies, candids, quick pictures, not things subjected to editing) is that they are undeniably fact, but something in the back of my mind always whispers, They’re right. 

My phone’s photo feed provides me timelines, little moments that keep large stretches of time real. Throughout the early height of the pandemic, there are pictures of interesting animals I saw at the empty park, our cats, food I made, candids of our little family in the pool, empty shelves at stores, signs announcing closings, masks left in the street, craft projects, our plants—tiny reminders tied to a specific moment in time that mean this whole year really happened. Not a weird montage from a movie. We all probably feel that way about 2020 sometimes. I just feel like that a lot.

At the time of that trip, though, I didn’t believe I was psychotic—although I knew very little about what psychosis truly was like. I certainly didn’t know how to articulate any of that. But could it have been a subtle prodome symptom, an early warning sign? Maybe. My first definitive symptoms of psychosis came just six months later.

I suppose it’s not important now, but it’s interesting to ponder looking back. 

On 2021

I’m very late for this, but given the “diary” in The Schizophrenia Diaries, I like to give an annual… let’s call it New Year’s (end of 2021)/(twenty-fourth) birthday update.

I made lots of writing progress last year. I launched my newsletter, my fiction project, In Blood, Our Legacy, published three books (can’t believe it), and made progress on this blog, my alternative sexuality blog, and all my fiction on Archive of Our Own.  I launched early access memberships and more on my Buy Me a Coffee. I’m still posting about twenty-five thousand words per month across my projects, and hoping to publish my fifth book soon. Wrapping up a few things and clearing my plate a little because I have so many more ideas I want to make space for and write. 

I also started teaching alternative sexuality webinars (January 2021). I taught twenty-seven classes in 2021, including events for The Eulenspiegel Society (TES), the first alternative sexuality organization founded in the United States (NYC), and Wicked Grounds, an adult coffeeshop, gallery, and boutique (San Francisco). I currently have a seven class repertoire. I launched my website for this as well, with loads of class content, now on a subscription basis, consulting, and now Office Hours. I’ll be teaching many more classes this year for lots of awesome venues. The positive response to my content has been overwhelming. This past week, I taught four different classes for myself and for two other venues, including another class for TES.

I’ll be teaching at my first conference in April, THRIVE, an alternative sexuality and mental health conference, presenting my class, Schizophrenia in the Scene, on how to be an ally to alternative sexuality practitioners with schizophrenia and other forms of psychosis, as an acquaintance, group leader, or partner. (I’ve pledged half of proceeds for that class to the National Alliance on Mental Illness; most of my classes were free in 2021, but are now mostly ticketed). 

I also launched Las Vegas TNG (The Next Generation) in May. We had twenty-one events throughout the rest of the year, and our first (outdoor) event in 2022 got about thirty people. This is a social group for local eighteen to thirty five year olds to explore alternative sexuality topics and more in a safe and supportive environment. There are many TNG chapters around the world. We’re having lots of fun and making new friends.  

I began taking the online, 400-hour Private Residence Butler Course through the International Institute of Modern Butlers (January). It’s a self paced, one on one correspondence course that has taught me so much that I channel into my homemaking and teaching. I’m currently on Module 8 of 22, but picking up the pace and working on it every day. I’ve picked up a lot of new related skills and been working on my health and therefore consistency.

2021 was a wild year, and I can’t even cover everything here. I’m thankful I got to spend so much of it with my amazing wife, awesome mom, and adorable cats. A lot’s been going on and is coming up in 2022, as well. Can’t wait to see what’s in store.