Tag: schizophrenia

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 a different 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 that important now, but it’s interesting to ponder looking back. 

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 printout of my latest NaNoWriMo novel, and Xanax. We’re all on Xanax. 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. She swears loudly, then snaps 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 to 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 while I loved learning, the subjects in theory, 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 my favorite professors over lunch, discussing this book and that. I liked forming a schedule around interesting sounding subjects. I liked creating pretty study guides, and even studying them, not to test, but to learn. 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, getting a relevant 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, couldn’t imagine dropping not matter how challenging it got. 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. 

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, on and off phases becoming more on than off. 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, fasting entirely, 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 mostly 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 quite a while now, and am trying to recognize that for me, it might just be an effect of psychosis, and treat it as such.

Still. Things to think about. 

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

Part of me wants to say it’s just physical health stuff, 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, did 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, have a snack instead of dinner, 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 had taught 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 with her. 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 before ten o’clock, 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 a caffeine pill (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 a light dessert and tried not to think about the calories, 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.