My Schizophrenia Story

When I got my first definitive sign I had a mental illness, I was writing.

I was near the cusp of fourteen and in Algebra I.  December 2011.  Given some time to do homework or such at the end of class, I, as I often did, took to writing.

I was writing a character death scene in which the character in question drowns.  In the ultimate irony, the character in question was schizophrenic—but we won’t get there for a while.

The important thing at the time was that I had a near lifelong fear of water.  Being a desert dweller, it didn’t come up much, but the ocean, especially, or even lakes—drove me into a panic.  I had recurring nightmares about tsunamis or storm surges, drowning.  This scene was close to home.

At some point while writing about this character running out of oxygen, I snapped out of my zone and realized that I actually couldn’t breathe.

Things went quickly from there.  I was rushed to the nurse’s office and then to the ER, hyperventilating on the edge of blacking out, vision going dark, limbs too numb to stand, clutching at the chest pain.

I was diagnosed with my first panic attack.

And after the first, they kept coming.  Over the summer, I started therapy and medication.

About a year later, I was taking a Biology exam when I started being taunted by red, blobbish, demonic figures drowning images of those I loved—down to my cat—in blood, singsonging gibberish insults.

I began having such episodes as frequently as the “old” panic attacks.  I was often delusional—paranoid, physically lashing out at anyone trying to comfort or move me—or catatonic—my arm dropping limply if you lifted it—during.

By spring semester of tenth grade, 2014, it was far too much—especially at this high pressure magnet school—and I left school for a year of homeschooling before I was able to get my high school equivalency a year early.  I was too agoraphobic to leave the house for a while.  It was a critical time for me in many ways.  My parents got a divorce.  I made my first adult friends—all writers—and got into my first serious relationship. I attempted community college for creative writing and made a few bucks writing clickbait.  I volunteered and got involved with NaNoWriMo.  Mostly, I wrote. 

Parts of what at first seemed like—maybe, at the time, were—isolated episodes, became patterns, habits, and day to day, on a much lower level.  Some things, in hindsight, had been with me my whole life.  I sought another diagnosis by now, besides the anxiety and schizophrenia—autism.  I spent most of a month nearly nonverbal, and was almost hospitalized.    

When things got worse, my mood plummeted.  For most of 2015, I fell into patterns of self harm and suicidal ideation, or at least the urge to run far away.  I attempted suicide that September, and it was a turning point.  I swore off self destructive urges, save a few once off relapses I could count on one hand years apart, and threw myself into change.

In the fall of 2017, I left to attend a private four year liberal arts college in Cambridge, MA.  I loved the school.  I loved the town; I loved the people there; I loved my classes.  That wasn’t the problem.

Being too far from home, maybe, on my own, or meds that needed to be adjusted—whatever it was, I landed in a psych ward—finally, after a lot of near misses, hospitalized for the first time, less than two months into the school year.

I tried to stick it out for a while, going back and forth on my decision, but within a few weeks, landed safely home in Vegas, at a loss for what the future looked like.

Eight days later, I met the love of my life.  That changed everything. 

Now, the timing, of course, looked horrible.  But three years later to the day, 2020, we were married in a ceremony in the beautiful home we own, surrounded by people we love, as people pursuing our passions.  I was about to self publish my first book, which would be quickly followed by my second, and was soon to start teaching alternative sexuality classes via webinar (within months, I’d also be running a related local group).  I was going to start taking a household management course online, and was learning how to be an effective landlord.  And, I was a happy housewife who got the girl, the two cats, and the house on the end of the cul de sac.

In the ceremony, our officiant mentioned that we had packed thirty years of marriage into three years of courtship.  Two deaths in my family, and estate handling.  A pandemic.  I almost died of black mold poisoning, all but bedridden for months.  We moved.  I had surgery.  I went off and then back on meds, though I eventually left therapy, for now.  We thought, briefly, my wife might lose her job. Medical emergencies or surgeries for the cats.  Mental and physical health issues.  Panic attacks, sensory overload, hallucinations and delusions, dissociation, depression, hypervigilance, flashbacks, and nightmares.  For all the health issues I brought in, I also now had PTSD from one of those family deaths in Summer 2019.

Is everything perfect now?  Is everything solved?  No, but I’m writing on a laptop in front of me with a warm cat in my lap and my beautiful wife three feet away.  The sun is shining; the neighbors’ son plays with his dog outside.  We saw friends and family yesterday and we will today. I have things to do I can’t wait to get to.  In a few months, we’ll vacation in Lake Tahoe—I guess I overcame that water phobia.

And life is pretty good.

Turning Hallucinations into Characters: Are They Any More Real?

She’s here again, so I’m not having as okay of a day as I thought.

The backyard is mostly dark, but she’s there in the shadows of the bushes, darting or teleporting around.  Compared to what I usually see in dark shadows when my mind turns on me?  I’ll take the puppy.

“Hi, Farrah,” I deadpan from the swingset in the AA tone.  It has been a long day, and I no longer care if the neighbors can hear me.  Still, I take out one headphone, still blaring Hamilton, like it matters.

Farrah smiles at me in this way that real dogs don’t really smile, wags her tail and bounds over, under where I swing.  Back through.  Again and again.  Like she’s trying to get me to kick her full speed.  She’s worse than the little kids at the park.  I sigh and, properly distracted, stop swinging.

My darling hallucination races in circles around my feet.  A lot of energy for the evening.  What? I ask her mentally.  You’re not a herding dog.  But she wants me inside, much the way the real cats start herding me to the bedroom around this time.

But it doesn’t seem to be sleep she wants.  I’m determined to sit in the living room and write down an idea I had on the swing before I do anything else.  When I do, Farrah settles down.  I can feel this weird sense of relief on her, like I feel it as my own when I get the idea safely on paper before my mind gives up completely.

I look at my notebook.  This was what she wanted? 

I look back up.  She’s gone.

All right.  I’ve accepted that Farrah’s basically a mirror of my own emotions most of the time, and if everything about her says, “Write now now now,” then I guess now is the time.

… 

Writing the schizophrenia fiction piece I’m working on is hard at times. There’s a lot of me in it, even more than in most of my fiction, and in a trippy, intimate way. There’s a lot of Farrah in it, too—even more literally.  I give her, from chapter one, the same role in the schizophrenic main character’s life as she has in mine.  So now she’s not only my schizophrenia tamagotchi, but one of my characters.

And my characters, like Farrah, have a little bit minds of their own.  Many authors think of it like that, but for me it’s even a little more true, I think.  My characters jump ahead of me both in plot outlining and in daydreams that slip away from me.  I fade into a somewhat omniscient position in their world and often find it hard to come back whether I want to or not.  When I do, it’s often disorienting, especially if I totally lost track of the real world and snap back abruptly due to the doorbell ringing or dissociation suddenly clearing or such. My world, the real world, goes away entirely, and here I am in theirs, less and less in control the longer I stay in and the emotionally deeper I dive. 

It’s kind of like Ahtohallan in Frozen 2.  You can go deeper and deeper into this world of sensations and memories that are not your own.  To a point, you can get back out, though the journey back gets longer and longer.  After a point, well: 

“Dive down deep into her sound

But not too far, or you’ll be drowned” 

So what does it mean now that Farrah—originally, and, still, a recurring hallucination—is now a character in one of those worlds my mind vanishes to?  Does she get to play a double role in my psychosis, not only entering my world—which my characters don’t—but finding me trapped in one of hers?  Is that why she beckoned me to the notebook—like asking me to come home? 

Usually, when I write, it’s taking something only I can see—the story in my head—and turning it into something other people can read.  It’s creating—Real from Not Real, in a way.  Completely imaginary concepts floating through my brain turn into hundreds of pages I can hold in my hand.  It’s not making the story Real, but making that dreamscape in my head widely accessible, like handing out a key, a map—in the form of a book.   

But if I take something as deeply Not Real as Farrah, and give her that quasi Real form… does she become any More Real?  What if other people can “know” Farrah too—by the power of words on a page?  Does that make her less just a quirk of my brain chemicals?  Someone saying that they hallucinated Harry Potter, for instance, would be much easier to communicate with—in this socially acceptable form of quasi Real—than someone hallucinating some boy with round glasses and a lightning shaped scar who could do magic, with seven books’ worth of story that only they could see.  At that point, we might not share the exact vision of Harry—but I sure have a clue what they’re talking about and the seven years of magic seems a lot “saner”. 

When I write and get feedback, people tell me their thoughts on my characters.  They might have a different opinion than me about their moral stances, or a slightly different picture of what they look like.  They might even go off and have them in their own daydreams, their own versions of them that don’t just follow the script, but are based on their identity more than their role in a plot.  People tell me about gasping when my characters are surprised, holding their breath when they’re afraid, crying when they’re upset, developing crushes on their love interests.  

These characters aren’t just concepts in my head at that point.  They’re out there in the world and I can talk about them with other people the way I talk about people I know in real life, or about Harry Potter.  It’s not uncommon for my wife to walk into a conversation I’m having with my writer best friend and ask, “Wait, are we talking about real people?” (The answer is usually no.) 

So what about Farrah?  If I make her just as accessible as any character—if others can talk about her like someone they know, or like any known fictional figure—is seeing her “saner” now?  Is her identity something like a socially acceptable shared delusion, when we can both hold the key to her world in our hands?

If she got as popular as Harry Potter?  Probably.

The Stories We Tell Ourselves: Narratives, Trauma, and My Childhood Dog

My wife told me that her version of the story starts here:

We’re sitting in the car, driving to my dad’s house. We’re passing the Walmart and the AC is fighting the Vegas heat, the stifling air quality two days after the fourth of July. She takes my hand. “I’m sure it’s fine,” she says, then grimaces. This is a validating aha moment for me at the time—she has doubts. Later, she says she regretted the words the moment they were out of her mouth. But what if it’s not fine?

But for me, the story doesn’t start in the car.

As a writer, I like to start in the height of the action—I would open this story with me standing over the body.

But that’s not where my real version of the story starts. The one I tell myself on long walks and long nights like a lullaby.

No, the story starts with Ziva.

Ziva came to me as an awkward looking Dutch Shepherd puppy as I was finishing the fifth grade and embarking on the terrifying journey that is middle school.

She stayed with me through panic attacks and psychosis, self harm and delusion, lost chances and bad breakups, my parents’ divorce and leaving school several times over.

When I’d attempted suicide at seventeen, my best friend’s mom, a psychiatrist, told me I had to hang in there because Ziva would never understand why I left her.

So I hung in there.

Ziva, however, passed in the spring of 2019. I had a lot more, or understood I had a lot more, to hang in there for by then, and hadn’t felt like I’d been just hanging in there for years; no cutting, no attempts. I was in the relationship of my dreams and surrounded by people who loved me.

But one morning, a few months later, Ziva came back to me in a dream.

In the dream, I was in my childhood home. My dad’s house, at the time, in reality. Ziva entered through a burst of white light.

I understood in the dream that she was dead, but in the grips of sleep, believed that she had come back to visit me. She wagged her tail and spun around. I gave her lots of scritches and told her all of the things I could want to say.

But Ziva kept looking back at the white light she’d come from, antsy. Like she was trying to tell me something. Maybe that she had to go again. I let her run back into the light. I woke up.

That morning, it became clear no one had heard from my dad in some time.

That morning, we were in the car. “I’m sure it’s fine.”

That morning, I stood over the body, and wondered if something in me had already known.

I tell myself the story a lot.

Ziva. The messages with my mom. Why were heat sensitive packages piling up propped against Dad’s unopened front door for days? Why had he not put the trash bins down at the curb on trash day? Sitting in the car. Knocking. Using my spare key to open the door. Thinking that I am the only one with a spare key. Mom, now his next door neighbor, was thinking of checking on him when she got back from an errand. I have the key that was hers. Yelling for Dad in a house where I am the only thing living. Walking back out, down the stairs, swearing I will not hand the key to anyone else who’s not a professional.

It’s not fine,” I tell my then-girlfriend, now-wife through the passenger window of her car. She’s confused, not having gathered from my demeanor that it’s not fine, though I’m not making much sense verbally. “There’s this thing in my dad’s bed. It’s not my dad. But… I think it used to be.”

I had left the door open behind me, the key more about blessing than physical entry. The smell wafts out of the house. She gets it.

Calling my mom. How do I tell her? She is out at lunch with Grandma, on break from considering puppies at an adoption fair. Calling 911. “No rush, I guess.” Enough firefighters for a calendar, who just keep offering me water while I try not to puke on the lawn. Police, and a report written at my mom’s kitchen table. What can I say?

I call my best friend in the bathroom. “My dad’s, kinda… dead. I think he’s… been dead, for a while now.

Grandma tells me, “Oh, Hannah, I just knew something wasn’t right. I just knew it wasn’t right when he didn’t put the trash bins out that week…”

The coroner. “You look really young,” she tells me over and over.

Twenty-one,” I say, unable to think of anything else.

And a counselor who is so high empathy I think she might now be having a worse day than I am.

First we have to identify him,” the coroner is explaining to my mom, as we fill in details.

You can’t just…?

It’s not… really… a visual thing.

Well, what about fingerprints?” My mom loves crime shows. She knows how they ID a body at various stages.

This isn’t really…” The coroner is trying to be gentle here. She looks at me, the known witness. “This isn’t really a ‘fingerprints’ kind of situation. Do you maybe know who his dentist was? For the records?

My mom has a white knuckled grip on my hand. The volunteer counselor looks like she might cry.

After the coroner leaves, my mom examines a picture she took of my dad in his youth, in a collage frame in her room. He is victorious, standing on a rock at the end of a long hike, arms thrown to the sky. Yosemite at sunset is the backdrop, their favorite beautiful place, the place they met, lived, worked, and fell in love.

Cheers,” my mom says to the sky, to the picture of Dad, holding up her gluten free beer. Some of Ziva’s toys still line her floor.

I think parts of the story have been compromised by time—my private game of telephone. Other parts, by flashbacks, by nightmares, by hallucinations—all blurring the narrative.

Sometimes I try to change it. I don’t start with Ziva. I go back to the day my father almost certainly actually died. Ten days earlier. We’re sitting on his couch. I’m in the neighborhood to bring in Mom’s mail and check on a few plants while she’s on a trip with Grandma, pick up a few items I left when I moved out.

I visit with Dad. We sit on his couch. He says he has a headache. We talk about anything. He says he doesn’t think that anyone really kills themselves. Evolution wouldn’t allow it. Depression is what kills them. The parasite that pulls the trigger—that’s not you.

But that adds up to the beginning of a very different story.

My father didn’t kill himself. I shook the pill bottles on his nightstand, all as full as they come. I looked for a note and found nothing. I found his guns stowed safely in his closet.

No, my father had a heart attack.

And I cannot quite bring myself to tell the story that’s not so neat, that has false leads. I always come back to starting with Ziva, with the narratively neat omen.

But that’s not how life works.

In one of my writing projects, a character with PTSD seeks and gets a chance to watch video footage of one of the most traumatic events in her life.

It’s re-traumatizing to watch, but she’s obsessed with what details the following flashbacks, nightmares, time, retellings, and additional trauma have blurred.

When asked if seeing the “truth” made her feel better, she says it’s complicated.

I understand that. The sequence is definitely something born of my own emotions.

I wonder what I would do if I had the same opportunity.

Really, I know I could never resist. I know it would be traumatizing all over again. I know my final answer would be it’s complicated.

Still.

I have three basic PTSD nightmare templates that seem to cycle on a loop, though inconsistently.

In one, we’re moving, or buying a rental property. In any case, we’re touring a house, sometimes empty, sometimes model home. Either way, there’s always a bed in one room with a corpse in it. And it’s never addressed in the dream, really. A sigh of, “We’d have to get a biohazard team in again… the ozone machine…” as if we’re fixing a plumbing issue.

In another, someone dies, and it’s dramatic but often off screen. It’s emotion based, a montage of the trauma, grief, and logistics to follow. Pro se probate court and handling of possessions, telling people, paperwork, and the talking, talking, talking. I’ve been through the process enough. Dad. Later, Grandma, too, lies, lays, all too still in her bedroom, but it’s been minutes, not days, and family talks around her.

In the most common dream, though, I’m talking to my dad. Sometimes someone else, but most often him. Sometimes he prods me to remember something. Sometimes, it hits me all on its own. “You’re dead,” I’ll remember, often aloud, in the dream. And he’ll immediately decay, turning into the ten day old version of his corpse.

I can run down the templates easily. I’ve done it so often, my best friend had a nightmare identical to the third version, though they never met my father, dead or alive, just heard about a hundred versions of this dream. They woke from it once in the way I’ve woken from it a hundred times: bolting upright, in a cold sweat, panting, shaking, and desperately trying to scream.

Narrative therapy is supposed to address these stories we tell ourselves. By editing that narrative, we edit our outlook.

There’s a lot of potential I see here, as a mentally ill writer.

Change the narrator—cue empathy.

Change where it begins—add context.

Change the focus—change the moral of the story.

Change where it “ends”—add hope.

Changing your fate is a common theme in fiction.

I don’t feel like the story I tell myself really has an ending. It fades into other thoughts at various points. Probably for the best.

But soon enough, I always find myself back at the beginning: with Ziva.

The Notebook Universe (Delusion)

My wife and I went to the dentist recently (a thrilling start to any story, I know).  I was just in for a routine cleaning, her for the first of a series of more involved appointments.  But that day was just an exam for her, and, finished before I was, she sat near me and made small talk with the hygienist while I made garbled sounds around the vacuum, water, and polishing tools.

At some point, while I was—understandably—distracted, she had an idea, and, with nothing else to write on, jotted it down in the back of my nearby notebook, sitting with my things on the counter.

But I didn’t notice this. 

Flash forward a few days, and I—somehow for the first time—noticed the note.  A mundane investment strategy to look into.

The thing was that I didn’t write it.  Or I didn’t remember it.  But there it was, in my notebook, in my pen’s ink.  Not in my usual handwriting, I was pretty sure.  

And reality broke.

I showed it to her.  “I can’t remember writing this,” I kept saying, distressed, convinced I had left myself a note I had no recollection of.  It was not on my next page in line, it wasn’t dated, the page wasn’t numbered, it wasn’t in my table of contents; at the moment, it just made no sense to me.  

A friend was over; I was just with it enough to insist we didn’t have this conversation in front of him.  We didn’t.  

She thought at first that perhaps I was upset she’d used my notebook without asking.  But she grasped quickly that this wasn’t a roundabout way of communicating I was upset; reality was just broken by the surprise, something that occasionally breaks my concept of real.  The unexpected twist in reality.  I had no problem with her using my notebook.  

She explained that she had written it.  Several times.  The dentist’s office story.  But I couldn’t grasp this.  My mind was already off in the alternate universe it was building without me to explain this, while ignoring all easier logic.  In this reality, everyone had Their Notebook.  Like you had fingerprints or a social security number.  And only you could write in your notebook.  I don’t know how this formed or why this made more sense than her borrowing mine.  But in this world, this meant that she had to have written this note in her notebook, but, due to our deep connection or legal marriage or something, her notebook had in a way “hacked” my notebook psychically, transporting notes between them.

That wasn’t so bad, but my mind was spinning with possibilities.  Did that mean that anyone could get into my notebook from a distance?  I didn’t want literally anyone in my notes.

And I was off investigating locks and privacy measures (which apparently stopped psychic transports). She let me.

Reality slowly returned as I tried to focus enough to make sense of Amazon reviews.

(In the end, I did decide that a bit of security—against real dangers—wasn’t my worst idea, and got a fire and water proof accordion style folder—a type I’d been considering for my notebook and pen and loose papers anyway.  We already have a fireproof safe for important documents, but nothing portable.) 

So went the notebook universe.  Would’ve been a cool story premise.  (I did end up writing about a non magical stolen notebook shortly after, this time about an existing character with actual privacy concerns.)

But, thankfully, I grasped within hours that the premise wasn’t reality.  And so episodes go.  

Flash Memoirs From My Notebook in 2020

I started to worry about living today.

I was worried before about surviving.

Food.

When will it run out?  Where will it come from?  At what cost?  At what risk?  For how long?  Who will it feed?

Water.  Soap.  Medicine.  Toiletries.

Today… 

Will I pretend everything is okay enough that I can write?  Read?  Crochet?  Make a font, make something fun to eat?

Even some of the worst apocalypse novels are told via diary.

What if I run out of yarn and electricity and paper and pens and books?

Before I run out of food?

… 

I dream about Dad a lot, dead or alive.

It’s not usually really him, if dead.

Sometimes it’s Mom.

Sometimes it’s Grandma.

I think about the email he sent my mom about fleeing, about the box in his garage with outdated first aid gear.

And he said, “It’s irresponsible not to be prepared,” about living and dying both but— 

Bold words from a man who died without a will. 

… 

Sometimes Dad’s alive in my dreams but I know he’s not; sometimes I dream about the grief itself. 

I fall asleep in my bed; I wake up standing next to the body again. 

I zone out in my room, snap out of it in a flashback, standing next to the body again.

Standing next to the body again.

And again.

… 

How do I tell Mom I’m finally starting to fall asleep with my eyes closed, that I jump just as much when startled but I’ve never screamed, that when I blink in daylight it’s usually okay, that white linens aren’t as frightening now, that I went into the bedroom while my girlfriend was sleeping without thinking, that I don’t sleep on the couch as much?

If I talk about getting better, she’ll say the same, “It should’ve been me,” and I’ll say:

“That’s a noble game,” or, “But it wasn’t,” or, “But I’m glad it wasn’t,” or, “No, Mom, it really shouldn’t have been you.” 

Mom’s never seen me cry over it and she’s not going to.  

… 

I’m still trying to think my way out of that room.

There’s a dead bird I’ve passed on my walk at the curb for a few days now and I keep thinking I’ll walk the other way or not look and then I don’t, and it’s decaying into liquid, decaying, decaying, and I think of Dad, and how I thought I wouldn’t sit with Grandma’s body, either. 

… 

Morning.  It’s sun warmed, bright, sunlight patches on light carpet, sunbathing cats, warm fur, stretch, purr, yawn.  Smells like sunlight on light dust.  Sun, sun, sun.

… 

My walk—everyone else is in pairs—you can tell who dragged whom.  It’s almost cold out.  Crisp.  Fresh.  No hot pavement scent yet.

… 

Brunch.  Clear glass bowls of chopped fruit still wet from washing.  A few flowers remain alive in the vase.  Stripes of sun through the blinds on the tablecloth.  Sweet strawberries and Nutella, the crunch of toast.  My best friend is bedheaded and in pajamas.  My wife to be is dressed in black.  We all talk and laugh too much and too loud. 

My fiancee and I cook dinner together.  Evening slats of sun.  The broiler, the frying, the oven, the stove—hum.  It’s hot.  Everything smells delicious.  She is so beautiful.  The potatoes are colorful, the pork chops shaping up to the right hue.

… 

Today’s the kind of mental health day where you listen to Evanescence and hope for the best.  Time and space happen to me strangely.

It’s 9:30 AM and I’m nonverbal, and it feels like I shouldn’t be—it’s too early, too much of a problem.  Nonverbal, like drunk, happens at more like dinner.  But I woke up like this, and I don’t drink.

… 

My dearest fiancee,

It is May 2020.

The world is ending.

And you have asked me to marry you.

… 

It’s late afternoon, hot, dry, the sun just starting to cast long shadows.  The pool water is cool and clear, has to be eased into, but refreshing.  Mom is drinking white wine out of a Dixie coffee cup.  All of the neighbors are in their pools too, cannonballs and voices carrying over.  My mom and my best friend and my fiancee and I splash each other, blow water through pool noodles, throw a ball around.  Everything smells a little like chlorine.  My fiancee and I lay on the bed in the afternoon and cuddled and talked about the future earlier.  Later, we all eat dinner still a little wet, but in dry clothes, and pick at desserts knowing we’ll sleep well.  All the people I love are happy.  We talk about the engagement.  The AC isn’t too cold.  The food is good and plentiful.  I stepped out of the pool and started dinner wet and still in my underwear.  And life is good. 

… 

I have started to hallucinate a golden retriever puppy regularly.  Her name is Farrah. 

The smell of heat on pavement.  Sweat.  Water getting warm in bottles.  Swings creaking.  Gas station snacks eaten on the side of the parking lot in a patch of shade.  Kids yell in the distance.  My best friend’s voice.  The chime of the gas station door opening and closing.

… 

I woke up from my first dream where people were just… wearing masks.  How weird is it to adjust?

I wake trying to scream and batting at a corpse that isn’t there. 

… 

The Christmas tree with rainbow lights.  Wrapping paper, stockings, pillows, blankets—everywhere.  The fireplace is on.  Games and snacks line the table, brunch abandoned.  Instrumental Christmas music plays.  I lie in the pile of wrapping paper and blankets wearing my Santa dress, head on a bathrobe gift, my wife next to me, my best friend next to her.  We laugh.  Mom is close by.  I’m home.  It’s Christmas morning.

“Are You Hallucinating?”

“Are you hallucinating?” 

It sounds like such a simple and important question.  But there are several catches that people don’t realize when they want to hear yes or no.

First question: do I know I’m hallucinating?  I usually have a pretty decent grasp on that for the big stuff, but not everyone does.  Corpse, not there.  Dog I don’t have, not there.  Hallucinations.  

But is that flash of light in the corner of my eye from traffic out the window, or my own mind?  Is it just a trick of the light?  Is staring at a trick of the light unsurely for way too long a hallucination?  

What about changing real objects?  Is that cup upside down on the counter, or right side up?  Well, if I just confirm: is there a glass?  That’s not useful.  Sometimes it is Alice in Wonderland like distortions, larger, smaller, some more subtle than others until your fingers flit through the top of an object that doesn’t quite reach there. 

Is there a slight aura around that lamp, or just me?  Is the cat messing around upstairs making hard to describe noises, or is it in my head?  Neighbors talking indistinctly, or just me?  

Should I start describing everything in the room to you to make sure we see all the same things?  Hear?  Smell? 

What about the fact that my sensory processing issues mean I frequently hear very real sounds that other people don’t pick up on until they really listen for them?  What then? 

I remember in a bad psychosis phase putting on noise canceling headphones and realizing how much noise I still heard.  But it was just that: noise.  Like a white noise machine.  Like very steady running water.  Like the sound of a crowded restaurant when no table is drawing attention in particular.  Like the cats making a ruckus upstairs.  It just kind of added mental decibels to what was really going on around me (which, as someone with sound sensitivity, is its own very real issue).  But how to describe that? 

Also consider that my line between reality and hallucination, or even fantasy, is jagged and thin and I’m highly suggestible in that way.  If you say, “Are you seeing Farrah right now?”  Well, I wasn’t.  Until you said her name.  Now I kind of got a flash of her, my little recurring golden retriever, like a mental flashback.  But is that the normal helpless visualization that comes from people talking?  What if, three minutes after you said that, she hasn’t quite gone away yet, flickering in and out, under a real chair in the room?  “Ah, now I am.  Nope, not anymore—wait, there it is! Oh—nope.  Hold on—ah, there—no.”

Is my daydreaming over the line of hallucinating when it sometimes slips a few seconds ahead of my actual thoughts?  When characters can do things unexpected?  When I can’t snap back out of it?

Is seeing a blur out of the corner of my eye that’s never there when I turn a hallucination?  Is it a hallucination if I sense something that isn’t there, but don’t strictly see it?  

What if the real issue is delusion—times I think I’m hallucinating something that’s very much there—like the person asking the question? 

“Are you hallucinating?”  It’s not really a yes or no question.  No is a simple, soothing answer, if temporary by nature.  Yes means something definable has gone wrong without doubt.  But it’s not really hallucinating or not hallucinating—or, for my Hunger Games fans—real or not real.  

The answer for me, sometimes, is definitively yes.  But I’m not sure I’d ever give a definitive no—because what do I know?  Who am I, the schizophrenic one, to answer that?  I don’t trust my perceptions any longer.  And how long do you have to think you’re not hallucinating for before it counts?  If Farrah was here three minutes ago and isn’t now, can I say no?  An hour?  A day?  A week?  Ah, gerunds.

I don’t really have a better question to propose.  Just some things to keep in mind.  It’s tricky in a lot of oft overlooked ways.  That’s the thing with schizophrenia—it’s not a real or not real game—even when it is mostly episodic, you are always questioning.  Every flash of light, every distant conversation, every dog, every bump in the night.  Real or not real?  Might want to ask someone else. 

On 2020, and More

2020 has been a hell of a year for everyone. 

For me, it meant turning twenty-two, buying a home, getting married, writing accomplishments from a tenth NaNoWriMo to self publishing, pandemic quarantine keeping me from my library volunteering, my best friend moving in and then out, going back on meds, reading dozens of books, crocheting dozens of projects, pursuing the idea I might be having seizures (I don’t), losing another beloved family member, trying new recipes, making new fonts, the US election, taking some writing workshop classes, riots in the streets, trying new photography techniques, exploring being a landlord, growing some plants, wrangling the cats, and so many other things.

It’s been a wild year for literally everyone I know.

2019, I reflected recently, was also a wild year for me. Respiratory surgery, losing my father, becoming a landlord, starting to volunteer at the library, more NaNoWriMo, reading, crocheting, pursuing possible autoimmune or allergy issues (none), recipes, fonts, photography, cats.

2018? Moving in with Kate eight weeks after we met, trying out a tech job, trying a community college class or two, getting one of the cats (and becoming step mom to the other), four months all but bedridden by toxic black mold poisoning, leaving a toxic primary friend group or two or three, reading, recipes, writing, photography. 

2017? A community college class or two, my first trip by myself, leaving for college in Cambridge, my first psych ward stay, coming back from college in Cambridge, meeting Kate eight days later, pursuing our relationship, writing, reading, photography, recipes. 

Yeah, when our wedding officiant, a good friend, said Kate and I had packed thirty years of marriage into a three year courtship: he was right.

And my mental health was very rocky over the summer or so, and with time, meds, circumstance, effort, so on, it’s vastly improved.

There are bad days. There are days I lie on my office floor and dissociate until Kate finds me and brings me some tissues and water and a snack and a blanket and hugs.

There are bad nights. Nights I forget to close my eyes to try to fall asleep because I’m so used to keeping them open to keep the images at bay. Nights I wake trying to scream. Nights I sleep on the couch because the bed is too much of a trigger.

There are good days. There are days I cannot put words on a page fast enough and days I spend outside happy to mostly swing on our swingset and admire the weather.

Sometimes, those days are back to back. Sometimes, a rough morning becomes a great afternoon. Sometimes, a long, dark night becomes a sunny, beautiful morning.

I had a dream that was one of those fine until it’s not dreams. I stood in the living room of my childhood home, now my rental, but it looked as it did when I was a kid, or maybe as it did early on when it was just my dad living there. But it was still that Wizard of Oz yellow. With me were my mom, my dad, and my grandma. 

I became aware it was a dream, but in a pleasant way. My dad and my grandma have passed, and I focused on getting to “visit” with them. First, my grandma. No one but me really said much but she kind of nodded and smiled as I said all the right things. All the things I did say before she passed, but always want to say again. I love you; thank you. I miss you. 

I turned to my dad, and realized that this was no longer a dream, but now a nightmare. He was beginning to transform into the image of the corpse that comes to me far more often than an undisturbed image of my father, and at the first tinge of black on his flesh, I snapped, “Don’t try any bullshit,” and immediately woke up.

I nearly laughed.  Don’t try any bullshit would not exactly be what I would say to my father if I could, but I didn’t think the dream was some kind of a religious experience or real visitation, and so to say don’t try any bullshit to what is merely a manifestation of PTSD struck me as very funny. As I got over that, I realized the day I had woken up on. And I indeed didn’t have any time for bullshit that day. It so happened to be my wedding day.

Kate and I were married on our third anniversary (of meeting), at home, by a good friend, with a small audience of dear friends and family. We exchanged not only rings but daggers and cloaks, symbolic gifts, and I mean, who doesn’t love daggers and cloaks? We cooked our own reception dinner for a total of ten and ate mostly on the patio. It was wonderful. 

As our anniversary was halfway through November, this meant that it was two weeks on the heels of Halloween. October had been a rough month in a few ways, ups and downs, but let me just say: Halloween is a rough holiday for someone with corpse trauma, man. Let’s face it: for a lot of people, it’s literally just a contest to place the most disturbing or realistic looking fake dead bodies in your front yard. Or hanging out the trunk of your car. Or in the windows of your business. Or anywhere else.

I was so on edge that when I stumbled across a man lying between two cars, half under one of them, by the curb of our street, I almost screamed. Not in the way I do out of the PTSD’s hypervigilance (and I do wonder about having the hypervigilance as someone whose PTSD is from an event where it absolutely would not have been helpful. I joked to the 911 dispatcher, “I mean, no rush, I guess.”) He was silent and very still, no signs of motion, no big tool box nearby, no friend or music keeping him company, and half under a vehicle. As I approached, coming back from my walk and about to have a heart attack of my own, I realized that he was working underneath his car, tools beside him, motions very close to him and totally under the car. He gave me a kind of confused look, one that said he understood my initial panic and then not just how strong it was. I nodded, still a little unsure that he was okay, but he was quiet and nodded back, and I moved on, heart pounding for another forty-five minutes though my front door was less than two minutes away.

I haven’t been seeing my therapist, though I’ve texted her a few pictures from the wedding, a Happy Thanksgiving. A brief phone call to my psychiatrist now and then. A trip to the pharmacy or two, though it now seems they’ll send my med via mail, which is nice, as we’re still trying to largely quarantine. And, skipping the weight, the consultation that literally asks, “Is it for sleep or something else?” You’re a pharmacist, my dude, you can say the word.  Schizophrenia.  Seroquel, my current medication, is prescribed often for simply disturbed sleep, and frequently for bipolar. And, also, psychosis. 

But yes, days, weeks, months, years, have their wild ups and downs. Soon we’ll see what 2021’s will be. 

On Psychosis and Writing

I get an idea. 

A few minutes later, the very distinct thought: I need to stop thinking about this too hard.  Or I need a pen.

My fingers twitch.   

Pen.

It can’t move fast enough on the page, chaos that will be a brief note in a dated, color coded table of contents. 

Tucked in the back pocket of that notebook that is rarely far from me is a sheet of paper with emergency information about me on it.  

In a previous draft, one of the notes, the sort that’s more for psych ward intake than found unconscious in a park, noted a few topics that tend to make my condition worse.  Absurdist jokes about reality; things like The Matrix or Inception; general death and gore; certain corners of politics. 

The immediately following note said that I might bring these up first—some of them even extremely frequently; I spent years talking about nothing other than gory Hunger Games fanfiction—but to tread with caution.  And that I especially bring them up in writing. 

It can be hard to find a balance between reality and fiction when you have a condition that heavily blurs those lines to begin with, and the mind and overactive imagination of a writer.  I have never been one to write much fluff and happy endings; I write about apocalypses and dystopia, morally gray villain protagonists, death and torture, gore to disturb horror fans, extreme mind and power games, toxic and abusive relationships, manipulation and gaslighting.  The note also recommended don’t look in the notebook.  More so a you’re responsible for what you find. I’ve read that such dark obsessions can be common for people with PTSD, another factor here.

Yet in reality, the stray comment that is innocently just incorrect can send me into a frantic spiral of questioning what exists. 

So, yes, I need to stop thinking about this too hard.  Or I need a pen.   

Frequently, when I question whether something I do, think, or feel, is normal, there are two people I ask.  One, my wife to be, is seemingly neurotypical and works in STEM and barely even reads fiction, usually at one extreme of the answer spectrum while I am at the other.  In the middle is my best friend, a writer in much the same genres I am, who has ADHD.  The overactive imagination of a writer gets them halfway to my end of the spectrum, but psychosis takes me the rest of the way. 

Asking about daydreams, my end of the spectrum was, “The room disappears basically entirely.  I am now seeing and hearing my characters like I’m exclusively in the room they’re in, in detail.  I can experience things through their senses.  It may or may not be ‘pleasant’.  It’s all a little bit my doing and a little bit theirs.  I’m dissociating.  It is frequently hard to snap out of.”   

Kate, my fiancee’s, end of the spectrum was, “I am thinking about an unrealistic idea with less logic and more fancifulness.”  I understood that and did that myself sometimes, but it wasn’t what I meant by daydreaming, and her version never really went further than what she described. 

In the middle was, “I kind of see a picture in picture window of my characters doing things; I can hear it; they might be doing well or bad emotionally; I basically control it.  Sometimes I’m a little spacey after.”  I sometimes, but less frequently, experienced that version, but again, for them it never went further, and for me, it still wasn’t what I called a daydream. 

Since I have started taking meds again, I have had an easier time slipping out of daydreams, their grip on me less tight, less emotional.  The rest is still true.  But for a few days as the med levels stabled out in my body, the daydreams were almost hard to stay in when I wanted to—and I found that, deeply affected by psychosis or not, they’re a very important part of my writing process and I missed them.  I felt, strangely, like losing that intensity to the daydreams was to lose touch with my characters, which felt like losing touch with not only writing goals but also good friends. (Now, whether or not most of my characters are good people is a very different question).

I was glad when I was again able to stay in them, but more at will, largely stopping when it was no longer a good thing to be doing at the moment.  

I’ve written before—and God knows I’m not the only one—about the relations between writers and creativity and mental illness.  Most talked about, though, are anxiety and mood disorders, certainly substance abuse, and some personality disorders.  Psychosis, and especially schizophrenia, seem less well documented. 

It’s something I’d like to explore more in the future. 

Assorted Illnesses and Language (A Conlang Concept)

As someone into grammar and linguistics, who debates the requirements of a split infinitive and the correctness of implied antecedents and whether you can punctuate dialogue with semicolons, for fun, language is in my head a lot. 

As someone with schizophrenia, not to mention autism, language gets messy. 

I’ve pondered making a mini constructed language (conlang—a language artificially created rather than naturally evolved) based on superlatives. 

Tired, tireder, tiredest.  

The thing is that the difference between “tired” or “very tired” or “sleepy” or “exhausted” can mean very different things to lots of people. 

To me, “exhausted” clearly meant, “I am about to fall asleep on my feet and it is hazardous for me to stand up.”  I found out that apparently, other people use exhausted to mean what I call pretty sleepy—a strong urge towards going to bed as things got hazy. 

Additionally, I separated mental and physical energy in a way a lot of people apparently do not.  I can be ready for a long, productive writing session while barely able to sit up.  Much less frequently, on the other side, I can be nonverbal and ready to run a mile.  Their correlation is low if not nonexistent. 

Plus, it can be hard to describe things that are incredibly subjective or an uncommon experience.  How dissociated are you?  How intrusive are the hallucinations?  How bad is the sensory overload?  This isn’t a new problem—say, pain—if you’ve ever been to a doctor’s office, you’ve seen a chart of smiley faces and numbers desperately trying to solve it.

So I pondered a sort of mini logical language—a conlang meant to remove ambiguity—that would use some extremely simple ways to describe certain spectrums, to be used between me and people its relevant to.  I faced the reality that they would go “which one was that word again?” and I would tell them the definition, which meant I should just start with that definition.  It still might be useful for journaling or something, and it’s still in my mind. 

Say, tired, tireder, tiredest, sleepy, exhausted, mental and physical energy. 

It could be given a rating system, maybe 1-5. 

MentalTired1 – messing up a few words now and then, a bit slow to catch hidden meaning or jokes, not coming up with brilliant ideas. 

to

MentalTired5 – nonverbal, non-responsive to language input, likely crying. 

or 

PhysicalTired1 – notable muscle fatigue, depending on cause, might be slightly short of breath/sweating. 

to 

PhysicalTired5 – it is hazardous for me to be sitting up unsupported; will be asleep shortly. 

Etc. 

There’s also the kinds of overlap—mental distress that creates physical symptoms.  Anxiety and muscle tension, nausea, chest pain.  Depression and lethargy.  Hallucinating and dizziness.  Sensory overload and headache.  Things that can be hard to explain in English if you have only ever experienced the symptoms independently, or only the physical side. 

When tested for diagnosis, I took an IQ test, which I don’t find to be the one true measure of intelligence or all of what it’s sometimes made out to be, but it was interesting, and an example here—  

My verbal reasoning?  130. 

My spatial reasoning?  92. 

I’ve almost assuredly written millions of words of fiction in my life, never gotten a B in English, but I both miss doorways for walls and still have to do the L thing with my hands to find left and right on a daily basis. 

The difference between skills like that also influences how some days I can write a book but not sit up. 

When those physical and mental lines get blurry and when adjectives don’t describe symptoms, language gets tricky.  At least English—I may have to look into others. 

What seems like a long time ago, I pondered going into a very specific form of being a therapist as a career based on what I would call constructed language therapy—like art therapy, but creating with language.  While being a mental health professional is not for me, and I have no idea if that as a therapy type would’ve been really feasible, it was an interesting concept. 

Words make people feel powerful.  It’s why we reclaim slurs, cling to favorite quotes and lyrics, wear some labels with pride. 

Surely there’s something to a therapy practice of building yourself up by making language that has failed you, work for you. 

Just a thought. 

Functionality Thresholds and Medication

So I saw a psychiatrist through an online urgent care service after remembering that it was an option, and started on a new antipsychotic. 

I had a lot of mixed feelings about going back on meds.  At first, I felt like it was a cynical move—the action that confirmed the thought that I wouldn’t get better without meds, that I was dependent on them again, that I was worse now than I was back when I got off of them or at any point in between. 

Then I started to look at it a little differently. 

When I got off the meds, I was not working, in school, volunteering, being a great housewife, or honestly being productive at much of anything.  My standards for functional were a lot lower.

I think what’s happening now is more that I’ve hit a threshold. I have a lot more things I want to do now.

I’m deep into multiple writing and other creative projects (I recently won Camp NaNoWriMo with writing over 50,000 words in July), I read several times as much, I happily handle nearly all of the domestic responsibilities, I take classes now and then, I do property management and investing, I go on walks, and when there’s not a pandemic, I volunteer at the library once a week. 

I think that if I wanted to do what I was doing when I got off of meds, I absolutely still wouldn’t need the meds. 

But I want to be doing a lot more—and I’ve hit a ceiling.  I can’t do all the things I want to do now without the assistance of meds. 

It is less that my abilities are that much worse and more that they are being pushed for so much more. 

So I’ve had almost a week on the new med.  It knocks me out at night; I sleep like the dead.  I had thought my sleep had been largely okay for a while, but it seems the quality was lacking in a way I couldn’t measure, because during the day, I comparatively have so much energy now I find myself confused on what to do with it.  I dissociate much less and less strongly, and haven’t had a super noticeable hallucination since I started. 

So I finished Camp NaNoWriMo, then wrote some more.  I started reading several new books, including some on AirBnB management.  I got back to crocheting; I socialized; I got the house in shape; I experimented with my new instant camera. 

I feel much better about the med decision.