Person First Language: But Who Am I Without Schizophrenia?

The thing with mental illness is that it’s all in your head and it’s not who you are.  And, well, yes, it is all in your head, but your head is a pretty important place, and if we scientifically consider the brain the center of who you are, then isn’t any long term major mental illness, you know, a part of who you are?

Person first language comes up a lot, the idea that you should say, as an example, a person with schizophrenia, not a schizophrenic (person), because they are first and foremost a person, not their disorder, disability, so on.  I don’t like person first language for myself, because I think it misses the point for me.  I am a schizophrenic, just as much as I am a daughter, a wife, a writer, so on.  You wouldn’t use person first language to say I am a person who writes or a person who is a writer, would you?  You’d just say a writer.  

So then you have to ask the question: when do you use first person language, and what does it imply?  Separation of the descriptor and identity?  I am a person who writes because I pick up a pen now and then, but I am a writer because I identify as one, spend a significant amount of time on it, care about it that much.  Okay, but I identify as a schizophrenic, too.  It’s a part of who I am just as much, if not more.  So what does the assumption of using person first language for it really imply to me?  That it’s something I shouldn’t identify with, that you assume I don’t want to identify with. It’s just as much an assumption as saying a schizophrenic, and it tries to decide for me what my identity should be. 

I don’t speak for all schizophrenic people here, only for myself.  I know some others do consider it solely a negative (and I still endorse seeking treatment to achieve your desired balance in any case), and it’s had much more devastating effects on their lives than it’s had on mine.  Though, I will throw out there: so have a lot of identities. Should I stop saying I am a daughter because others might be the victims of child abuse? 

So if I identify as a schizophrenic, there’s the question of if there is a difference between my self and my schizophrenia.  I don’t think there’s any more of a separation point there than between my self and my writing, and ultimately I believe that what deserves a place as part of one’s true identity (rather than a list of traits or roles they’ve ever exhibited) is something that’s up to the individual. There’s the whole keep your identity small concept. 

But let’s examine it for a minute.  Who am I, without schizophrenia?

My personality definitely would change based on a lack of paranoia (being a paranoid schizophrenic).  Even in periods between more complete delusion, there’s… traits. Without assuming negative intentions from others, I’d probably be more open minded and perhaps make more friends, and make fewer snap judgments (though, largely, my snap judgments are pretty good, so I don’t know if that part actually turns out any better for me).  I’d probably then exhibit traits of the different pool of people I’d associate with over time, the whole you are the average of the five people you spend the most time with concept.

If I was less on edge, if I didn’t have the constant there’s someone behind me feeling and obsession with death, I’d presumably be more relaxed, but perhaps less productive. Quirks of mine around security might slip away, with or without consequence.  

If I didn’t have negative, insulting voices floating around my head now and then, I might develop higher self esteem and self sabotage less (though this isn’t too much of an issue currently).

If psychosis didn’t—shall we say enhance—my PTSD symptoms (flashbacks that are really hallucinations, hypervigilance plus paranoia) among others (the autism, the anxiety, and yes, those are part of my identity, too), those would probably drastically change, be less gripping.  

Without negative symptoms (loss of interest in everyday activities, social withdrawal), I would probably be less hyperfocused on the things that never lose my obsessive interest (say, writing), and more interested in the little dopamine boosts of playing a game or watching a movie together, which I usually lightly resist or at least don’t usually truly care for.  This might be less productive, but a big mood changer, and, while I’m still an extrovert, it would have a huge impact on my ability to maintain acquaintances and turn them into friends, and engage in normal buffer activities, rather than my “converse for twelve straight hours, maybe over food or alternatively parallel play/work and almost nothing in between” approach.

Having a firmer relationship with reality would probably bring my daydreaming out of the maladaptive/dissociative category, as I believe those are highly connected for me, daydreams longer taking over my reality and replacing it, just being something that still feels inside my head, or at least picture in picture style visualization. This would completely change my writing process as I know it, as it’s been observed that most of it is my characters running wild in my daydreams—controlling me far more than I control them, both in demanding my attention, and in the way I absorb their traits—until something coherent and gripping happens to emerge (largely beyond my conscious control). Then, it’s just a matter of getting paper and making some last minute adjustments. Removing schizophrenia also removes writing as I know it. 

Gee… does that all sound like a major personality/identity change to you guys, too?  Even more than removing, say, my identity as a writer? 

So, yes, schizophrenia is also a part of my identity, I get to decide that, and I’ll also talk about it as such. 

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, 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 (plus trauma, due to events of my plots, before I had my own experience with it).  Still, I dove into research, the clinical I was largely unfamiliar with, but also finding personal accounts of others, forums, blogs, and more.  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, 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, leaning towards anorexia symptoms, though my BMI still hovered around an okay 19.9 or so. Still, I couldn’t feel too surprised. I’d seen that 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 the few other people I know 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 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 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 often project things onto characters long before I realize, Oh, that thought was for me, and then absorb the trait, emotion, interest, quirk, symptom, so on, myself, later, thinking that I first got it from something meant for that character.  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 external, sentient people. Still.  

Regardless, I find it interesting.  I’m trying to consciously turn away from disordered eating and not absorb that dangerous character element, and it’s nerve wracking, but I write this from a Panera with a mac and cheese and some snacks on the table, so I don’t exactly think I’m doomed. 

Things to think about. 

Would I Cure Myself?

After the whole finding my father’s ten day old corpse thing, I didn’t really sleep for about a year, until I went back on meds.

I think that this was understandable.  I think there are just some things it’s more dysfunctional to not be screwed up by for an extended period of time than it is to be super resilient, and that’s just one of them. 

I don’t know what would’ve happened if I’d gone back on meds sooner.  I put it off, not wanting to hop right back on chemicals when, for some amount of time, I was, simply, just going to be screwed up for a while. After about a year, though, I decided it was time.  The level of functionality I wanted then, compared to what I’d wanted before, was just not going to be achieved without meds. 

In any case, the year of questionable sleep.  

At the time, I’d been prone to going to bed around nine or ten, staying up a few more hours on my computer or with a book or my notebook, then sleeping in until ten or eleven.  (Now, I’m more of a morning person.)  But post trauma, after going to sleep as normal, I’d wake up around one and be up until after four or five.

I used this middle of the night time almost exclusively to write.  Or, I might message with my best friend, who was working some late shifts at the time, mostly about writing.  No house sorting, no lease drafting, no exhibits, no affidavits, no legal notices. 

Despite the constant exhaustion, I often find myself looking back on this time period strangely fondly.  I was in a creative peak.  I was making constant breakthroughs on a plot I’d been stuck on for years, and churning out huge amounts of words, but what I really remember was my suddenly infinite amount of emotional writing energy.  

I could write all the angst and fear and pain in the world, drawing from a seemingly bottomless well of inspiration, without emotional burnout.  I didn’t tire of writing emotion, didn’t start staring at the page blankly after too many hours of creating deeply emotional content rife with tragedy. I was living buried so deeply in real trauma that fiction seemed infinitely cathartic, not burning through my usual well of emotions and then needing to be put down for a while. 

I spent the year or so mostly creating, but towards the one year mark, when I went back on meds, I also started posting fiction regularly online for the first time in a long time (and that had been mostly fan fiction; now, it was original work).  I went back to writing mostly linearly and still prolifically, went back to doing more editing, formatting, advertising, all of those bits, the things that come with an Internet presence.  

Right around the one year mark, I started this blog.  I think it was around when I started to see the light of seeking more treatment that I realized I had so much real darkness to talk about. 

After the one year mark, I started self publishing books, started teaching webinars, and more.  Left therapy, kept the meds.

Still, so much of what I’ve accomplished since that one year mark—the things that sound good on paper: posting, publication, teaching, earning income, the plaudits—was, creatively speaking, born of that sleepless, nightmare and flashback and hallucination and dissociation ridden year.  Of course, the pandemic happened in the middle, too, along with my grandmother’s death, and other things to keep stocking that dark creative well. 

Meds, aided by time, gave me the mind to be outwardly productive, but it was that year just post trauma, still off meds, that truly offered the creative side.

Of course, I’m still creating.  But sometimes it’s not the same.  Before I adjusted to the meds, there was a brief time my daydreams weren’t as vivid, and I feared that.  Considered going down a bit.  There are a lot of times I wish Farrah, my puppy recurring hallucination, “appeared” to me more often, like a weird form of company.  Even the nightmares and flashbacks, while unpleasant in the moment, stock something creative in my brain it’s hard to pin down and I wouldn’t want to do totally without. 

I honestly don’t aim for symptom free.  I think psychosis and the rest of my mental health is a part of who I am to be balanced but not eliminated, just like any other.  Imagine if someone offered you a magic pill to never feel, say, mildly depressed again.  Would you take it?  It’s likely you don’t want to be cripplingly depressed, you want the will to live and get out of bed in the morning, not to be a danger to yourself locked in a psych ward, but wouldn’t it be strange to never feel mildly depressed again?   Do you know who you are and how your emotions work without it? 

I have other traits that can be negative but are nothing to worry about when kept in balance.  Like, I love chocolate.  And chocolate can be bad for you.  But I’m far from overweight, have balanced blood sugar, am not lacking nutrients, so on, so I try not to worry about it.  

I don’t aim for symptom free but for balance.  Anxiety can have me rocking in the fetal position on the floor fixated on death, or it can motivate me to do only my best work.  The obsession with structure and routine I get from autism can make me resistant to positive changes and a nightmare to improvise with, or a productive, efficient person who’s hard to sidetrack for long. Maladaptive daydreaming can take over my life and have days pass where I externally mostly stare at the wall, or it can make me a creative, prolific writer. 

Some symptoms I could maybe do without.  I’m not really sure what sensory overload/processing issues get me if I could isolate it, but also you can’t isolate it, and I’d keep the sensory seeking, I suppose. 

I err my balancing act on the side of healthy, happy, and functional, as logic tells me to do, but sometimes I kind of miss the other side.  I don’t like to visit it for long, and the reality of it isn’t just the romanticized tortured artist but a lot of actual grief, fear, guilt, exhaustion, and loneliness.  You probably wouldn’t want to live on a roller coaster, would you?  Still, it gives that rush.  It stocks the creative well. 

So I’ll take the Seroquel, but would I take the magic cure all pill?  Not a chance. 

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 but who finds it one of the only effective things for managing my chronic pain (usually, the 100mg first thing in the morning). 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. I imagine I’ll be posting this then. 

(It is tomorrow now. I have been physically very woozy and off balance, but it was a good day. I went out with my mom and her dog to lunch and errands.) 

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. 

I Worry for My Mother

I worry for my mother

What if she doesn’t return?

There are so many perils in our world

What will it be?

A rifle, a handgun, an automatic?

There are so many innocent lives to protect

In her line of work, they’re on the news;

They’re dead and dead and heroes

It’s a hard and noble job;

I’m always proud to answer when people ask me what my mother does

But it shouldn’t be so dangerous, I think;

And they should be so much better paid

“What does your mother do?” they ask

I tell them, “She teaches the third grade.”

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. 

On Developing PTSD… After Writing Characters With PTSD, as a Schizophrenic

There are a lot of complaints about how writers (and other creators) portray mental health, and perhaps one of the most mentioned issues is PTSD.

I’ve been writing characters with PTSD for almost ten years.  But I didn’t have PTSD of my own until just over two years ago.

Looking back over old works—while there are things I would do differently just because I’ve grown as a writer—I don’t find my portrayals of PTSD that inaccurate.  My research was thorough, including the personal experiences of others.  The insertion of fictionalized personal anecdotes of symptoms and some of the emotional charge, as in the after the fact pieces, is missing.  But I don’t feel dissatisfied with a lot of it. Though there are a few things I’d change. 

Shortly after the incident that gave me the PTSD, it took one pointed question from my therapist for me to literally say, “Yes, I’ve also read the PTSD diagnostic criteria.” I knew my stuff, and even while still standing there with my father’s ten day old corpse, I was very aware that it was the kind of thing that tends to leave you with long term effects.  The question from my therapist came only a few weeks later, not long enough for a formal diagnosis—something else I knew from research—but I could see the road I was on.

The new symptoms felt strangely familiar.  Hypervigilance was something I’d read about, wrote about, for so many years, that it didn’t feel new, especially as someone with pre existing sensory issues and anxiety.  It was so tightly woven into characters’ lives that finding it in my own felt kind of like a fan of any work stepping into that world.  Of course you’ve never gone to Hogwarts, Harry Potter fans, but you’d kind of know your way around, wouldn’t you? 

I did find it interesting that I developed the hypervigilance, since it would’ve done me no good in the traumatic incident.  Nightmares, too, beyond what I’d developed as an anxious child with an overactive imagination, felt strangely… familiar.  I’d spent enough restless nights writing about characters waking up in a cold sweat that waking up like that myself before turning to the notebook or laptop didn’t feel so new.  Flashbacks, too.

But what really made trauma feel so familiar?  Was it really just so many years of inflicting it on characters?  Was it pre existing anxiety? 

But here was another complication, a major wrench to throw in any comorbid disorder group: the schizophrenia.

Over time, my flashbacks manifested a significant portion of the time as true hallucination, something that I was used to from schizophrenia.  Now, here’s an almost funny thing: in fiction, one of the most critiqued techniques of portraying PTSD flashbacks and nightmares is in the vivid, clear, straightforward nature.  Real PTSD can give you a flashback to one sense but not another, to something somehow connected to the trauma but not directly, show you a hazy overlay, or be an almost purely emotional rather than sensory response. Nightmares often mix up elements of trauma with random elements from your life, not just playing the trauma again and again. 

But that’s hard to portray in fiction, especially in visual media like movies, and especially when flashbacks and dreams are also used as narrative devices.  Hence, you get those straightforward, easy to comprehend for the audience cutaway scenes.

But for me, schizophrenia mixing with PTSD did make daytime flashbacks manifest as clear cut hallucinations.  There wasn’t just the sensory confusion or disconnected emotional responses; I’d be straight up looking at/hallucinating my father’s corpse in the corner of the room, or in the bed—which became one of my biggest triggers—or perpetually behind me.  The laughably oversimplified PTSD portrayal was, oddly, spot on for me much of the time. 

Now, I have to remember that in all cases, my PTSD is not my characters’ PTSD, and none of them have comorbid schizophrenia.  But one reason trauma felt so familiar to me was that it was already a part of the characters already living in my head.  And all of the research involved in making that feel real. Another, that the schizophrenia induced hallucinations and anxiety I’d already lived with went a lot like the way PTSD flashbacks eventually manifested for me.  Perhaps the biggest complicating factor: my much thinner line between reality and fiction than most peoples’—if my characters experienced anything, it was much more like I was experiencing it than even most creative types would agree with—so maybe, in a way, I’d had a bit of self created trauma all along. Or maybe it was just tortured artist syndrome. 

But again, I risk the horrifically oversimplified portrayal of PTSD trope in fiction even if I’m true to some of my experiences, because of what schizophrenia makes it like, an interesting conundrum, and without characters with comorbid schizophrenia, it remains inaccurate. 

After my traumatic incident, I wrote a lot of dark material for an already dark project, mostly in the middle phase of largely sleepless nights. I was especially unpacking a pre existing character’s trauma from both previous and new drafts, especially in the immediate fallout, a time period I’d seemed to drift away from before, with many characters’ primary traumas existing far into backstory, aggravated by a dark world.  Was it my own recent trauma that drew me into that time period, or was it simply time for it anyway?  Hard to tell. Likely at least a bit of both. 

Though, wallowing in horror, gore, and otherwise macabre genres is a common trauma trope in itself, something like self inflicted exposure therapy—though I stayed away from my exact triggers, decomposition and the like. But I’d almost always had that draw to dark fiction, pre trauma—again, why? My pre trauma mental health symptoms—schizophrenia, anxiety—did seem to draw me more deeply into those, much like PTSD symptoms do for many others.  It’s almost like my mental health experience was always so close to PTSD, but with no real cause, a crucial part of it, before it developed. Some comorbidities are already more likely than others, too; maybe I was always all but doomed to develop PTSD at the slightest provocation, and I got a bit more than the slightest.

Things I think about. Plenty to unpack for myself and characters both. 

This Is What Schizophrenia Feels Like

This is what schizophrenia feels like,

It’s hearing a crowded coffee shop in a silent office, and hearing nothing in a crowded coffee shop 

It’s a fake flash of light here, a fake bit of white noise there

It’s an object looking upside down, wider, shorter, three inches to the left, and back again, and back again 

It’s turning down the music and realizing half the volume’s in your head

It’s something always in your peripheral vision that’s never really there  

It’s my “dog” that never needs feeding but can trip me on the stairs

It’s the “corpse” that I can’t shake in the empty spot in the bed 

It’s the “demons” that dance in impossible lines 

It’s real shadows taking shapes and shadows forming from no real object 

It’s putting on noise cancelling headphones that can’t cancel what’s in my head; oh

This is what schizophrenia feels like,

It’s real and it’s not real. 

This is what schizophrenia feels like, 

It’s the, “Even schizophrenia doesn’t make you unworthy of love,” like I thought it was the exception

It’s the caricature of a shouting schizophrenic racist like that’s all we are

It’s the, “Cat? I don’t see a cat,” even when you know it breaks my mind

It’s the romantic tragedy trope for no reason because it sounds extreme

It’s the, “I’m not qualified to help you,” from someone with a wall of degrees and a fake smile

It’s the no, I wouldn’t cure myself if I could

It’s the no, I don’t know if I’m hallucinating—

It’s the no, I can’t explain—

It’s the, “Did you take your meds today?” 

It’s the playing pretend at first, then 

It’s the uncomfortable expression; when you started talking mental health, you expected depression or anxiety; why?  

This is what schizophrenia feels like, 

It’s too much and it’s not enough. 

This is what schizophrenia feels like, 

It’s the pharmacy isn’t real and neither are you

It’s I have to protect my telepathic notebook

It’s I have to flush the meds flush the meds FLUSH THE MEDS—

It’s you want to hurt me and it’s, Let go of me—!

It’s I have to run away

It’s but only the house is safe

It’s I don’t even know anymore 

This is what schizophrenia feels like,

It’s true and it’s not true. 

This is what schizophrenia feels like, 

It’s staring at the wall seeing nothing

It’s staring at the wall seeing everything you can’t

It’s sinking into a daydream the way I’d sink to the bottom of the ocean

It’s the deeper I sink, the harder it is to surface

It’s but sometimes it’s beautiful down here

It’s characters three steps ahead of my mind

It’s the whole room doesn’t go away for you? 

It’s not noticing fingers snapped in front of my face

It’s limbs going limp 

It’s you’re supposed to be able to control waking dreams?

It’s how do I get back? 

It’s no I don’t control who my characters are 

This is what schizophrenia feels like,

It’s story and it’s fact.  

This is what schizophrenia feels like,

It’s a poem I’ll never get right. 

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 (noise pollution, chronic pain), 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 (bad chronic fatigue week, all that) 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.