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. 

If you liked this post, you might enjoy my blogbooksfiction, schizophrenia related class, or newsletter. If you wish you’d seen this a week sooner, get early access here. I also really appreciate constructive feedback. Thank you!

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. 

If you liked this post, you might enjoy my blogbooks, fiction, schizophrenia related class, or newsletter. If you wish you’d seen this a week sooner, get early access here. I also really appreciate constructive feedback. Thank you!

The Limitations of Translating Daydreams to Other Mediums

The other night at dinner, my wife and I were talking about doomsday prepping, and I joked that, if caught unprepared and possibly alone, my end of the world plan would be to go befriend the nearest preppers, go full Scheherazade, and become the group storyteller. They can’t just steal my supplies, they can’t really have me teach them my One Useful Skill and then kill me; I can’t be replaced by technology. I need to be alive and coherent, and the apocalypse is actually rather boring. And I have an endless well of material. Gonna go have a minor psychotic break. Be right back with new plotlines. 

Really, I think that is my grand backup plan in a lot of ways. No matter what happens in the real world, I have that endless well in my head to retreat to. I spent a decent amount of the height of quarantine staring into space while off in those worlds (and then somehow books got published about them). Nothing can destroy that. Too much Seroquel can definitely diminish the extent to which it can replace reality, turn dissociative and maladaptive into creative, but a decent portion is just the writer in me, not psychosis. 

And let’s be real, where am I getting all this Seroquel after doomsday? 

A few days later, I was scrolling the app store. I’m a digital minimalist (and just a minimalist), but I (mostly) accepted that there are a few things I still need the iPad I’ve struggled to justify for, and I got it set up again. Then, I ended up browsing the app store after downloading my small handful of go tos, seeing what was new for iPads. I was reminded of Minecraft (which I played briefly in 2016 or so) and The Sims 4 (I was big into The Sims 2 and 3 as a kid; I downloaded Sims 4 on sale several months back but other than playing around with making a few characters and checking out changes, didn’t do much and uninstalled it before it became a distraction). I’m trying to remain a minimalist but be a little less neurotic and considered giving one game or the other or both another go in my downtime. 

And I might. But at that moment, I remembered the limitations of the games I’d been not so much frustrated by, but bored with. By nature of being an app, there are limitations. It is an incredible amount of work if not impossible to recreate the detail of settings or characters in my head pixel by pixel, not to mention limited choices of actions, little real dialogue, and how many things are narration or feelings or inner monologue. It also lacks the touch, taste, smell, other sensory elements that I experience off in my head. Sometimes the limitations are a good creative challenge, a way to have to mix things up a little, get out of exactly the script I’m thinking of to see what might happen if something I’d written off had to be tweaked. At other times, all I can think is: why would I use an app for something I can do better with my eyes closed?

As a kid, I liked The Sims, as mentioned. I usually filled in the rest of the details in my head, though, going for simple in the game. I also didn’t recreate my writing as much as you’d expect, choosing new characters, settings, and plotlines to play out that were better suited to the game’s strengths and weaknesses.

I looked back at my notebook. I thought of drawing, or writing. I can’t really draw much—I’ve spent time each day this year trying to learn, but it’s slow learning, and slow to create, for me, and I still ultimately get stills that are limited by the tools I’m using. 

Writing, of course, my true creative love, is my medium of choice. But I thought more, and, really, that has its limits, too. It’s just the set of limits I’m most okay with. That I must use words to describe everything—I don’t have visuals or audio, powers of scent or taste or touch. That I only speak English fluently, that there isn’t a word for every incredibly specific thing, no matter what those fascinating words lists might have you think. I push at the limits of punctuation and grammar and word usage. There’s the fact that, in my head, my characters have specific voices, and I’m not going to redescribe—or manage to describe—exactly what they sound like every time they speak, nor exactly what they look like or are wearing, or that their skin is exactly this level of dry, or that they use exactly this imagined fruity scent of bath products, or that their favorite shirt has that soft texture of having gone through the wash a thousand times. 

There are also a lot of things that happen in my head that I can’t describe because it doesn’t actually work that way—my daydreams work more like dreams at times, not to mention being slightly beyond my control (the psychosis), and might not make sense according to laws of physics or reason. What shirt they’re wearing might flip flop in my mental vision based on the tone of the scene, but it’s unrealistic that they’re running in and out of the room to change their shirt based on the tone of conversation. Something might be perfect in my head, but when I try to write it out, I realize it might require someone to have their hands in three places at once, whether it’s combat or smut. 

And I can’t capture everything perfectly every time, so I need to figure out what is important, what is good enough, this time. A literal bomb could be going off in the story, but the important detail might be that a character’s eyes flicked to the site of the explosion right before it happened, an implication that they knew it was coming. I need to pick that out from the mental vision, not a description of the explosion. It might be worthwhile to give an idea of a character’s general fashion sense or even what they’re wearing in a particular scene, but not to mention every time they change their socks, unless that’s something that really says something about them, because they’re always changing their socks, or they never change their socks, or they have a very distinct taste in socks. Even writing a novel still feels like creating an outline, in a way.

But, I find it a worthy challenge. We’ll see if an app holds my attention this time, too.

(Update: still seeming the answer is no. But, fun very now and then.)

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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. 

If you liked this post, you might enjoy my blogfiction, or newsletter, and consider supporting me on Buy Me a Coffee or leaving constructive feedback. Thank you!

Being a Schizophrenic, Creative Type Dropout

There’s this memory that keeps coming to my mind recently.

I’m probably fifteen, and I’m sitting in my usual spot at the two lab tables pushed together, front and center, in my environmental science class, my program class/major.  We’ve just gotten our—I think—PSAT results, or some other big standardized test.  There are so many of them. My friends chatter somewhat nervously about their already high scores around me. 

I, sporting the ever present disheveled purple ponytail and bags under my eyes in the same color, the school fashion, am booting up my class notes on my school Google Drive account in one tab, and whatever writing project in the other. I usually work on both simultaneously, noting down the slide, then turning to my writing, evoking good natured teasing from our teacher as the others scramble to get the notes in. My overstuffed backpack beside me contains school supplies, several leisure books, a four hundred page binder print out of my latest NaNoWriMo novel, and Xanax. We’re all on Xanax. Dingo, the class bearded dragon, settles into the hood on my jacket. 

“Whatever, we all know Hannah did best,” my friend E says, of the scores. She’s the one not on Xanax; she’s on Adderall, and I hear any extras are a hot commodity. She snatches the oversized envelope out of where it still rests in my hand.  “Jesus FUCK!” she exclaims loudly, snapping her gum, earning a halfhearted: 

“Hey,” from our teacher. 

Everyone peers at my results and makes similar remarks. J, not sharing her exact results, squirms; she doesn’t test well. I squeeze her shoulder. I’m kind of in love with her anyway. 

I hang out with the somewhat nerdy kids, in an extremely selective magnet school, and they are wowed. Their scores are good.  They are by the time you take your actual SATs, your scores might get you into the Ivy League good.  Even J will go to a very nice college. M, currently muttering, “Jesus Christ, ninety-ninth percentile?” is a talented swimmer, always arriving to class dripping wet after waking well before dawn. Their percentiles are in the upper eighties, low nineties. 

But my scores are best, as E predicted. Because I’m Hannah, and I’m the smartest, and I’m ambitious, and I get all the plaudits, and I write books, and I’m going places, and I haven’t really slept in years. 

The funny thing about this memory is that I am, to my knowledge, the only one who doesn’t technically graduate. 

I effectively drop out just a few months later. 

… 

Here’s another memory.

Ultimately, after exploring options, I had opted to write my own curriculum plan and “homeschool” myself for a year (read: run around the arts district with the local NaNoWriMo group), then get my high school equivalency a year early. I’d already worn out public school, private school, magnet school, and online school. I’d now attempted a few community college classes, mostly online, without much enthusiasm or success. Depending on how I tell this story, I either had a psychotic break and dropped out of high school, graduated a year early after opting to be an autodidact homeschooler for a year, or I left to pursue my greater passions/”creative differences”. 

Now, though, aged nineteen, I was sitting in the hallway near my Anthropology class on a dreary morning in Cambridge, MA. I’d somehow gotten into a lovely, small, private liberal arts college with a very nice scholarship. It was a great school in a lot of ways, and I was in love with the greater Boston area (and maybe yet another girl).  But by October, I was in a seventy-two hour psych hold, and after almost going home to Vegas (recently rattled by the October 1 shooting), I had opted to stay.  Adjust my course load, work with the counseling center and disability office, change my meds, get myself together, and try again. 

As I sat in the hall, staring at my notebook, too drained to write, early to class simply because I had nowhere better to be, I dreaded going into the classroom. I dreaded sitting through the lesson. I dreaded sprinting to Arts and Social Justice on a different campus immediately after, and sitting through that. I dreaded the idea of going back to my tiny, sixth floor walkup dorm, and doing homework with my roommate.

I could not comprehend how badly I did not want to go to that class. 

And as I sat there, it dawned on me that I had never really wanted to go to that class, or to Arts and Social Justice, or any other class. There were ones I liked better and worse, had more or less passion for the subject, and got on with the professor better or worse. But I had never really wanted to go, never really wanted to do the homework. 

Why was I going to college? 

I just wanted to write, mostly. And what do you do with a degree in creative writing? Most of the courses I’d ever taken seemed to just be beating my will and creativity out of me. I had just dropped my planned second major, a self designed program in conlanging expressive arts therapy, realizing, after my psych ward stay—where I’d done the most productive writing since I’d arrived in Cambridge—that I could never work in mental health. I was thinking about doing the dual degree program, getting a Master’s because it sounded good, but why? I didn’t need a degree to write a book. I’d written several. This wasn’t actually any better than my community college classes online, and it cost a lot more: money, time, creative energy, sanity, being away from home. I hadn’t even wanted to finish high school.  

I… don’t want to be here. 

I had never really wanted to go to college, in reality. It just seemed like a thing to do. I wanted the experience. I liked sitting around with favorite professors over lunch, discussing this book and that. I liked creating pretty study guides, and even studying them. I liked the culture of study groups, of library and museum trips. I liked learning, I liked reading, I liked writing. But I had almost never… liked school. 

I didn’t walk into my Anthropology class. 

I stood, turned around, walked out of the building, and was at the airport less than eight hours later. 

After that, I started one more part time community college semester online just to appease those who asked, “But what are you doing with your life?” It got dropped when I became too ill with what turned out to be mold poisoning, and I didn’t look back. After sorting out the mold, septum surgery, so on, well, that was when Dad died. And suddenly I was making money, a landlord, and the fact that I spent all day writing and being a housewife (finally fell in love with the right girl who wanted what I did) suddenly seemed valid. 

So I felt like I could focus on that: being a housewife with my own projects. I published several books, and translated my nonfiction into becoming an alternative sexuality educator. I started taking a self paced online butler school course I was actually passionate about. I talked about books with friends and did challenges together and journaled and volunteered at the library and learned and read and wrote. 

And, no real regrets. School wasn’t for me. It’s for some people. But not for me. I found enough happiness and health and success and knowledge elsewhere. 

I think a lot of people think of me as the academic, educated sort, using obscure vocabulary words and always having my face in a book or journal, teaching and learning. But really, I’m a high school dropout who hasn’t loved school since the fifth grade. 

And I’m more than okay with that. 

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Becoming Your Characters, For Better or Worse: A Schizophrenic Author and the Real World

I’ve encountered a lot of firsts while writing the I’ll Give You series, as it’s been my first fiction project of any length since I started working on the ever ongoing Contrivance in 2011.  I’ve had a lot of fun getting to really know new characters for the first time in a long time, though I had kind of forgotten about their capacity to surprise me.

Over six months into writing the series, after having published the first book, one of the four main characters (and, mind you, there were only supposed to be two main characters at first, and this one wasn’t one of them) informed me, in the way that fictional characters do for me—a mix of the typical creative type and the schizophrenic—that she’d had an eating disorder this entire time. Was formerly anorexic/occasionally still struggled, specifically. 

I looked back over every instance in the series concerning this character and food.  Yup.  Body type: hmm.  Looked at her risk factors: unprocessed trauma, a dancer in profession, a sometimes perfectionistic self destruction type… yeah, there it all was.  

Interestingly, it was one of the branches of disorder I had the least experience with and least knowledge about.  And I usually stuck closer to writing what I knew in that regard. Still, I started research, the clinical I was largely unfamiliar with, but also finding some personal accounts of others.  I took a few online eating disorder assessments to get a feel for the key symptoms and treatment process, but of course I had amply healthy, normal scores, no indicators.

I wove it quietly into the background of the story.  Even when mental health got explored as a main theme, it tended to stay in the background, not the main issue we were dealing with and mostly… ish… a piece from backstory.  

Still, it informed a lot, lived in the background, and sometimes got brought up in companion pieces.  Certainly it was in my head, even as research slowed. 

Almost another year later, I was still writing, publishing book two and starting book three, but also fielding a few concerns building in my head, noting developing obsessions and tendencies over the last year.  I took the assessments I’d taken early on in research a second time.  This time, my scores had almost skyrocketed, all on the border or in the mild range of disordered eating.  Specifically, I had key anorexia symptoms—religiously counting and often restricting calories, constantly weighing myself, sometimes upping my daily exercise, even getting into a purging behavior or two—though my BMI still hovered in the low end of the healthy range. Picking up research again—more oriented towards virtual social spaces for those with eating disorders—I thought, Me, too, a lot, realizing I’d had a lot of the same disordered thoughts independently.

I couldn’t feel too surprised. I’d seen this one coming, a little. (Note: I know such online assessments are not all strictly scientific.  I’m just throwing it out there as anecdotal evidence.) 

While stumbling through those assessment lists, I’d tried another one, this one for empathy.  The score was out of a possible eighty, with scores below thirty indicating a lack of empathy common in people with autism.  My wife did it, too, and scored a fifty-eight.  I got fourteen

While I’d foreseen picking up the symptoms of a character struggling with the remnants of a disorder I don’t have, as a schizophrenic writer with a fine, fine line between character and self, often absorbing their traits, feelings, and symptoms, I remained a low empathy person in the real world, as noted on the paperwork when I was diagnosed with autism, and as shown by frustrated people in my life again and again. 

I’ve talked to other neurodivergent creative types about their lines between character and self in depth for years. Even then, I experience it differently than almost anyone else I’ve met, aligning much more closely with people who experience psychosis, where the line is… blurrier.  Thinner.  Flexible.  

I react more strongly to my characters’ emotions: laughing, crying, tensing, smiling, heart racing in real time on their behalf, sometimes cathartically when I can’t do it out of my own emotions.  Yet I’m a poor mirror for other real people, slow to pick up on and respond to social cues, often read as a little flat and quiet, mostly by those who don’t know me well. 

I almost slowly become my characters, but fail to lean into the personalities of those around me as strongly.  There’s the adage that you’re an average of the five people you’re closest to.  I think the people I spend time with can tell you a whole lot about me, but I honestly feel at any time more like an average of the five characters I’ve spent the most time writing recently, their personalities, interests, quirks, struggles, than the five people I’ve spent the most time with. 

Now, this can be a two way street.  Maybe as I shift in one direction or another, I relate more to one character or another, and spend more time writing them, though it often seems random.  Maybe, a year ago, something in my brain was thinking a lot about neuroticism around weight loss, or food (some of which I’ve always had in sensory issues if nothing else) for me, and I projected it onto a character instead.

I might frequently project things onto characters before I realize, Oh, that thought was for me, absorbing the trait, emotion, interest, quirk, symptom, so on, myself, later, thinking that I first got it from that character I quickly assigned the initial thought to. All possible. Art imitates life; life imitates art.  It is easier for me to reflect things already in my head in one way or another than reflect external, sentient people. Still, I really feel like the symptoms came later.

Regardless, I find it interesting.  I’m trying to consciously turn away from disordered eating/related behaviors, and not absorb that dangerous character element. I don’t think I’m physically at much risk, but I’ve been really struggling with this mentally for a while now, and am trying to recognize that for me, it’s ultimately an effect of psychosis, and treat it as such.

Things to think about. 

Just Another Day, Maybe

It’s been a long day.  Hard to say why.  

Part of me wants to say it’s just being on my period, and I can’t tell if that’s strangely logical or minimizing my own feelings. It could be that my best friend, more like family, left for a job in another state today. It could just be a long day. 

I feel like I was unfocused a lot of this morning, though I also got some important things done, scheduling classes I’ll be teaching in the new year, and even almost winning a game of ping pong with my wife (getting close is an accomplishment for me and most people). 

But by late afternoon, I was wallowing in angsty daydreams.  Making dinner went like this: put water on to boil. Set timer. Sit on couch, dissociate into my characters’ distress. Timer goes off.  Stumble over and add pasta. Set timer. Sit on couch, return to daydream. Stare, sniffle a little. Timer goes off. Stir pasta, mind still half somewhere else. Set timer. Sit on couch— 

By the time I got dinner on the table, I was on the edge of tears. Over… nothing in particular, or maybe things that happened to my characters that were not even quite canonical in their universes, dramatized montages, and certainly fictional in ours. My wife prodded at it—asking about both of the potential reasons for a long day I started with—but I shrugged it off, wasn’t up for much conversation, and mostly wanted to be left alone to fully return to my other worlds. I asked about her day instead. 

Finishing up dinner, unable to control the tears, I sat on the floor in the bathroom with the door closed and let them fall. It’s hard to explain the kind of tears you don’t really want to be soothed out of, especially when you’re not sure they’re over anything in particular, whether real or fictional. It’s like reading a sad book, or watching a sad movie, that is sad, yes, but good, so you don’t want to be interrupted. But not like, the tragic ending, or an especially climactic character death. More like one of those sad establishing character montages, like the exposition behind Do You Want To Build a Snowman, or the notorious, silent first minutes of Up. 

But in any case, I wasn’t ready to be done wallowing, so I hid for a few minutes until they came back under control, and my wife had gone upstairs. 

Then I went and did the dishes and cleaned up the kitchen, some other evening tasks, before retreating to my office, door shut, which isn’t super frequent and is usually for focus (really, to keep the cats out and not on top of my notebook or keyboard). And wallowed on the floor again. 

To complete the wallowing, I heard the vaguely sad piano music. This wasn’t so surprising, for a second, as in place of my usual rain sounds or Harry Potter themed ASMR, I’ve been using a calm piano Spotify playlist as my office background noise the last few days. Except I was ninety-nine percent sure that my phone wasn’t playing anything—I had just brought it up from downstairs with me, where I’d shut the music while using the phone as a timer.  But there was the piano, clear, but soft, barely rising above the hum of the air conditioner. Not any tune I recognized, nor anything coherent. It would pause, then pick up with a different key or melody or volume, or I would just hear a random isolated note here or there for a minute. Finally, I threw myself up off the floor and checked the phone. Nothing. Not coming from the phone. Just me. 

This struck me as interesting. Previously, I wrote about going down on my medication and hallucinating the Evanescence song I’d had on repeat. I was—back on my regular med regimen—again hallucinating music, but it was a hodgepodge of the (sixteen hour) instrumental playlist I’d had on shuffle. I’d wondered before if I’d done something wrong with the Evanescence besides the med changes. If perhaps something in it emotionally was a trigger (some of the chorus lyrics included can you hear me, can you hear me which was almost begging to be hallucinated), or if I just really needed to lay off the repeat button. But here I was again. 

Back on the floor, pondering that, finally distracted properly from the daydreams, I also noticed something else. I don’t remember where it began now—just a few hours later—but I had the thought, I’m still at the Marriott, and it was becoming more and more gripping. 

So, as context, in May, I used some of the extra Marriott rewards points my wife and I had sitting around from pre pandemic business travel, and had my own writer’s retreat/staycation at a nearby hotel. It was supposed to be three nights. I—and my wife—had anticipated that things might get a little weird. That I would stay up a bit late, snack on a few too many cookies, and get super absorbed in my fictional worlds, using the retreat to block out distracting reality for a few days. But things got a lot weird.  

I think because I underestimated the physical neglect. On my last full day, I realized I hadn’t brought any water, and had only had a mouthful of tap water to take my meds, and milk, since I arrived. I remedied this with a bottle of water and a Gatorade from the sundry store, but I mostly forgot about them after a few sips of each. I had neglected real food almost entirely, despite the fact I teach a class about cooking on the road. When I did the pre pandemic business travel with my wife, I made us nice crock pot meals and simple side dishes in a hotel room with nothing more than an old microwave and leaking mini fridge. At home, I eat at least two scheduled meals a day. Yet, alone and lost in writing, I had stuck mostly to toast, fruit, cereal, and dessert. I also acquired a microwaveable mac and cheese cup as something closer to real food, but I later found it mysteriously still sitting in the microwave, filled with water to the right line, but uncooked and abandoned. 

I had stayed up almost all night the first night, despite my usual at home bedtime of 9:30, then dragged myself downstairs early to check out the continental breakfast.  My sleep was weird the next night, too.  By that last full day, I uncharacteristically impulsively took an extra caffeine pill (another 100mg) midday as someone sensitive to caffeine. I had, realizing how late I’d stayed up and that I didn’t want to be in a coma all day, not taken the full dose of my antipsychotic med at least one night, either. 

I became a total wreck, and failing to find anything better available, had started self harming with manicure scissors, for the first time in almost four years. I calmed down enough to throw on some antibiotic ointment and call my wife and tell her all this. She was calm, appropriately concerned but understanding, and asked if I wanted to come home. I wasn’t sure. I tried to write some more. But by midnight, I realized the words had stopped coming that morning. After another phone call, she picked me up and took me home. 

Anyway, you can see how this makes sense as a source of a delusion. There’s a lot of stuff already wrapped up in there. Lying on my office floor tonight, I felt myself sinking into the idea that I had never left that Marriott.  That everything after was a hallucination, a dream, a… I wasn’t sure what. 

But we went to Tahoe, I thought, over and over, trying to counter the issue with more travel. In July, we took a trip with a friend and my Mom (a delayed Mother’s Day present for the busy schoolteacher) up to Lake Tahoe, got a beautiful Airbnb with gorgeous views and regular meals and sleep and meds. (Yet, it’s a picture of the Strip I took from my twenty-third floor Marriott room that lives on as my desktop background; I spent almost the whole time in front of that window, watching over the top of my notebook the flashing lights, the monorail passing by, the High Roller going around. The crazy city I’ve always called home.) It was like the never left the Marriott theory had come in a flash of enlightenment, but I was still thinking my way through it.  But… Tahoe. And everything else. 

I also had a slight grip, in a way, on the fact that the never left the Marriott thing was the actual delusion, and I was trying to avoid sinking into it, but also desperately mentally countering it, as if it needed to be countered and not ignored. I felt a phantom burning in my wrists that is usually a you want to cut kind of physical manifestation, but I thought, Or I’m dreaming. And they would hurt in real life because of what I had done with the manicure scissors that afternoon. 

And then, strangely, lying on my office floor, it all kind of went away. The daydreams were a vague temptation, but had no strong, magnetic grip on me. The piano notes grew further and further apart, then quieted, and there was just the neighbors talking in their yard on the other side of the wall. The Marriott theory was like something I’d read in a book once—interesting, but not demanding. The phantom burning subsided as I eyed the long healed faint marks. 

I took a swingset break, made us some Rice Krispie treats, cleaned the kitchen again, checked the Internet, started writing this—the most I’ve written all day—and got ready for bed. 

Well, let this weird day be over, then, and we’ll see what tomorrow looks like.

Images You Can’t Shake

I’m in a dream. There was a beginning, but now I’m rapidly pacing through the private school I attended so many years ago, turning the corner at the landing like it was yesterday.  But this portion of the hallway isn’t quite right—there are doors, doors, doors, on one side, and I’m throwing them open as I go, getting flashes of what’s in the room.  I know I’m looking for something, but I’m not sure what.  Each room seems to get me closer.  They become more and more disorderly, and more and more frequently feature a bed.  Then a few things happen almost all at once:

I realize I’m dreaming. 

I realize what’s behind the last door.

I throw open the last door before I can stop myself anyway.

Dad, of course, dead for ten days, of course, in the dream and filling my vision as I bolt upright, gasping, a scream diffusing in my throat.

And, I’m pretty sure lastly, my morning alarm goes off. 

So, 7:20. I take the same caffeine pill as always and sleepily breeze through my morning checklists as it kicks in.  Wash up, same clothes as always. One mile walk.  Wave to the same group of retirees and dogs as usual.  An hour of notebook drafting. My daily housewife routine.  Brunch, toast as almost always, at 9:30. Create stability where you can, y’know. And my autism loves routine. 

Still, my mind finds time to come back to the dream, writing about it, pondering sources—a visit at my mom’s house yesterday, rife with family pictures of those long gone, or maybe a recent pre Halloween Goosebumps story rewatch that featured decay—and putting on one of my favorite songs for one of those days— 

And I can’t tell if I’m drowning or floating

So I just keep on going, going 

And I’m running just to hide 

And I’m hiding just to breathe

And around every corner is the same night on repeat 

—and generally wallowing. 

Nothing dramatic, but feeling, over two years later, still desperate to shake the one image I can’t get rid of, nightmare, flashback, hallucination, or otherwise.  One of my characters said in a recent chapter, of her own trauma, “Of course I have to do it again.  I do it again when I close my eyes. (…) I do it again when I zone out too hard. Don’t you get that?” 

I get that.

I knew when I found my father that I wasn’t going to be able to shake that image.  It’s not really one of those visuals that you process in the moment.  It’s one of those… we’ll need to keep coming back to this, do it again, and again, to process. 

I felt very calm in the moment in a way (returning to the car where my wife was waiting, she thought all was well based on my body language)—and very determined that no one else see that image who didn’t have to, swearing to myself as I walked back down my father’s stairs, professionals only, and very aware that I’d decided to get here before my mother’s planned check in later—perhaps dissociated, but despite my day to day anxiety, I’ve always been strangely good in an emergency—and also very aware that it was all going to hit me later. 

I just kind of figured, I’ll have PTSD now. That was a trauma angle I hadn’t really thought of before, researching and writing it in fiction: the awareness at the point of the trauma of the future effects. I still don’t think I processed it fully for some time. 

Now, I’m working on a backstory companion piece in which someone asks the same character mentioned above, very shortly post trauma, what it is she’s feeling. 

She responds that while she’s not sure, it feels like grief (though no one has died), and when asked for what, she says, For before

I know I felt grief both for my father’s actual death and for before.  Before the trauma, before the PTSD, before the nightmares, the extra hypervigilance, the flashbacks, the ones that became hallucinations. For before that image. I grieved my father but also something I had never defined enough to know I could lose. 

It wasn’t any traditional loss of innocence grief story, and I don’t really think of it that way—I was still an adult with an awareness of the world at the time, though I think I aged a lot in the months after, not only trauma but adulting logistics (probate court and beyond), the independence to pursue my own projects, whatnot—but some people certainly might see it that way.

… 

Maybe it’s masochistic, but in a way—simply as a long time writer of trauma and PTSD and images characters can’t shake, and as a person who questioned my own resilience—I’m almost grateful for the experience. 

Maybe that’s screwed up, but it’s at least a better emotion than only sitting around going woe is me and I certainly wouldn’t wish the experience on my mother or anyone else who might, in some parallel universe, have walked into the house that day, or, I guess, in the ten days before it. The house was up for sale. I’m not sure if the realtor had access to the house without being in touch with my father—we were, strangely, ultimately not in contact long—but some home buyers to be may have seriously dodged a bullet. And if my father had to die, then I can only suppose it was all the same post mortem to him, and it appeared he passed in his sleep, at home, which many people would consider—if you must die one way or another—basically ideal. 

I always wanted to do research via experience where I could, or utilize past experiences as research for fiction. I made trips to the archery range to try it out back when I was writing Hunger Games fan fiction; more recently, I responded to a reader’s comment of appreciation on a requested companion to one of my original fiction series: Someone should, I bought a damn shock collar to research this scene and yes it was set to 99. Thank you! (To be amply clear, this was an alternative sexuality erotica piece and the product was safely tested on myself in that context, not an animal.) 

And I’ve thought about doing more out there things in the name of research—if there’s value in recreating my characters’ specific traumas/if it could be safely done myself. Things like that. 

So sometimes I feel like I’m experiencing my real trauma through the lens of writing, research. There are novelty tees and mugs out there with a message like, Warning: I’m a writer. Anything you say or do may be used in a story. And that goes for me, too. A distressing symptom can still have me running for a pen. 

Or a blog post. 

Psychosis and Beyond as Self Soothing

Farrah, my recurring puppy hallucination, often appears when I’m in distress.

While I don’t qualify as something like schizoaffective, which is different anyway, the state of my emotions and the state of my psychosis usually line up in some way.  Negative moods lead to more obvious psychotic symptoms than positive ones.

If Farrah appears without me being in distress, I frequently wonder if, subconsciously, I am.  Sometimes the answer was yes all along.  Sometimes I’m now so worried about finding the (perhaps nonexistent) source of the problem/the psychosis itself, that, in any case, I’m upset now.  Sometimes, I accept the hallucination as random.

Still, I have often wondered, Why Farrah? She is my only specific recurring hallucination that I don’t understand the source of.  The ones that are basically PTSD flashbacks gone wild—make sense.  But why the dog?

Recently, feeling stressed and with no such appearance from Farrah, I realized that I kind of missed her, would have liked her there.  Even if we want to label all psychosis as bad, she’s a free, ethical forever puppy that can’t really eat or poop, and who doesn’t want that?

I wondered if Farrah was a psychotic/automatic self soothing technique.  I can’t control it, but maybe some dysfunctional chemicals somewhere in my brain are saying, “Hey, man; chill out.  Here’s a puppy.”  Or, Here’s some free dopamine.

I’d much rather the dog than the ringing phone that I heard most of that day, at least.

I had to think about other psychotic symptoms as forms of self soothing.

Dissociation is not usually defined as psychosis by itself, but I feel like it’s a key part of my psychosis experience, so to speak. My early psychotic episodes frequently involved dissociation that manifested as akinetic catatonia.  Dissociation very commonly has origins in maladapted self soothing, mentally separating yourself from an upsetting or traumatic situation.  Dissociative Identity Disorder (formerly Multiple Personality Disorder) especially frequently has roots in traumatic stress early in life.

Dissociating was something I did frequently before I showed definitive signs of psychosis, and still do, mostly in the form of intense daydreams at the time. Maladaptive daydreaming is also not technically seen as a form of psychosis (and is not widely recognized) due to the separation that remains between fantasy and reality—but my lines there do get very blurry due to other psychosis symptoms. 

In any case, these daydreams take over my head somewhat beyond my control when something in me wants to escape. They’re certainly addictive and can be a disabling distraction, but also feel crucial for me as a fiction writer who escapes to my stories’ worlds.

One of the first symptoms my parents reported to mental health professionals was my tendency to spend multiple hours per day swinging on the swingset in our backyard, listening to a song on repeat with headphones, totally spaced out.  Daydreaming.  How upset I got when this was not possible for one reason or another.  This has followed me throughout my life. 

Even last summer, before my wife and I got a swingset in our new backyard, I walked to the park and back daily, sometimes multiple trips per day, to spend hours on the swings, with a song on repeat and my daydreams.  It was about a mile walk each way and the temperature regularly approached 120*F.  I was not deterred.

Some daydreams, the type I have on my office floor in dissociative states, tend to be cathartic wallowing on a character’s behalf.  They don’t echo the situation I’m upset about exactly, but branch out from the specific core feeling I’m having.  They won’t echo just sad nor exactly there is a pandemic and I can’t see my friends, but maybe lonely.  Sometimes these daydreams allow me to cry or fully experience emotions that I hadn’t been able to release or wallow in initially.

I experience other types of dissociation, too.  Some distressing.  But frequently, there’s the blank dissociation where my mind seems to go nowhere or into the void or however one might phrase it.  This might be the anywhere is better than here dissociation, where the daydreams are not coming (yet, anymore, or period) but I’m sure not ready to go back to reality. 

Other symptoms—delusion.  Now, delusion in the colloquial sense is very often a form of self soothing, especially in the form of denial, which is also a stage of grief.  But some delusions are distressing, especially the paranoid kind, and while that is true for me, others can, in a backwards way, be comforting.  

Reality breaks for me easily.  The feeling some people get from watching things like The Matrix or Inception, times ten, is easy to induce in me.  And when it happens, my brain needs an explanation, fast.  There is no time for logic—that something was fiction, a joke, a lie, a coincidence—and so my brain grasps at straws to explain the thing away.  While false and sometimes overly convoluted, the delusion fills that need—creating a “logical” if sometimes distressing reality—until the real world can set back in. 

Psychosis and other symptom sets are often not just a dysfunctional coping mechanism—and some of these automatic self soothing techniques only attempt to solve the problem another symptom created. But it’s still interesting to look at some incidents of symptoms in that light. 

I Went Off My Medication and Hallucinated Evanescence

What it says on the tin.

And it was, honestly, probably the most emo thing to ever happen to me.

Let me back up and elaborate.

I didn’t impulsively and abruptly go off the med (though the occasional flush all of it! urge is strong). What happened was this:

When I started Seroquel about a year ago (the only psychiatric med I’ve been on in years), I was prescribed 100mg, one pill at night. It worked like a charm for several months, but then I started getting the token grogginess in the mornings. At the advice of my psychiatrist, I went down to 75mg. Except that they don’t make Seroquel in 75mg tablets, so I actually took three 25mg pills at night. Okay, so that was fine. Grogginess gone, but sleep was still good, along with mood, psychosis, etc. I was told that if need be, I could go back up to 100mg and give her a call for a new prescription. 

During a week about two months ago where I was having trouble sleeping due to other factors, I went back up to 100mg, taking four of the 25mg pills. I kind of meant to go back down after that week or so, but the 100mg was working well and the grogginess hadn’t returned, so I stayed, and was given a new prescription to go back to 100mg.

Now, I was back to the one, 100mg pill, again free to go down again if it was too much. This pill still seemed to “hit me” differently than the four 25mg way and I felt the grogginess return.  I wasn’t sure if this was again other factors or the meds, so I tried cutting the 100mg (half, then cutting one of those halves in half again) and taking 75mg. (Bear with me through the numbers for a minute.) 

I did eventually attribute the extra grogginess to probably external factors, but I also didn’t feel any worse for taking the 75mg, and my psychiatrist had emphasized again and again taking the lowest effective dose, especially since you can develop a tolerance to Seroquel over time. So I took the 75mg for a few weeks. I felt stressed a lot, but attributed it to having a lot to do. I was still writing like crazy, and mostly keeping up.

Then I got curious, and went down to just taking the half (50mg). I again noticed no difference. In hindsight, my mood, focus, and energy had really begun to drop, but nothing crazy.  There was no difference in my sleep.  I fell asleep promptly enough, slept relatively soundly, dreamt (for better or worse), and woke with as much ease as ever. Now, I’d never been on only 50mg before and I didn’t, at the time, notice a difference. 

Thinking that odd, I kept going and went down to 25mg (a quarter of the pill, being all out of the former prescription). I did that for a few days and felt terrible but didn’t attribute it to the meds.  I was depressed and irritable as hell, but had attributed this to another problem. (I did have… something during that time frame I’m still not sure of. Stomach flu? My wife got a version too, whatever it was. That definitely wasn’t the med’s fault, but it was a separate set of symptoms.) I again didn’t notice anything different in my sleep, the thing I felt so sure I was going to notice a change in if the meds were doing anything useful. When I went on the Seroquel at first, it was the sleep I noticed. I still had some energy, and although it was too hot for my usual walks most of the time, I still enjoyed long swings on the swingset in the yard, this week to the soundtrack of a newly discovered old song by Evanescence I was really enjoying. 

Finally, I said, to hell with it, and one night skipped the med altogether.  And I lay there. And lay there. Sleep wasn’t coming. Even sleepiness wasn’t coming. I was irritable, depressed, mildly panicked, and incredibly restless. My head was pounding to the beat of that Evanescence song and it was stuck in my head playing on full blast, drowning out other thoughts.  Sensory overload coming from inside my brain. But it felt mostly just like having a song really stuck in my head, which for me I know always works a little more like hallucination than it does for other people. (You ever tried describing having a song stuck in your head to a hypothetical someone who has no idea what that means? Now there’s a thought exercise about sanity.) 

But I realized something was up, caved, and took the full 100mg, the last dose that I knew I had felt good on, and had only started going down from because of grogginess I now attributed to something else. Within fifteen minutes or so, I was calm, half asleep, and the volume of the Evanescence song had gone from 99 to 5.  It was like someone just whoop turned the volume dial down in my brain.  Still there, all the same qualities, but at about five percent of the volume. I could hear other thoughts. 

Oh.  So that explained a lot.

So, I’m back at 100mg.  I’m open to going back to down to 75mg depending on if the grogginess seems to return, and if my mood changes if I do go back to 75mg. But for now, back at square one. 

I think it was a worthwhile experiment even if it didn’t go super well—and even if it took me a while to realize it hadn’t gone super well.  No tragic consequences; it wasn’t really done recklessly, and I do believe in finding the lowest effective dose and not mindlessly “settling” on the current med regimen, even if it’s just proving where you’re already at; it also gave me some more confidence in the meds do important things for when I get those med flushing urges.  Today, I’m thinking, God bless Seroquel, but I’m sure that urge will come back at some point.

Besides, I went off my medication and hallucinated Evanescence should really earn me my official Emo Kid Card. Rock on.