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.

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. 

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. 

Knowing Your Mind Is Vulnerable, and What You Do About It

I’m writing.  It’s going really well.  Pages and pages of ink in my beloved dot grid Moleskine.  So many pages, I think to comment to friends about my comparatively unpretentious but equally beloved Bic pen that has somehow lasted me almost sixty total pages, plus about half of my previous Moleskine, and months of Word of the Day Post It notes, mailed letters, and other miscellany.  I included a picture of the inside of the front cover of my notebook, a gift from Kate, with that inside cover inscribed by her at the spot we met on the second anniversary of it, a callback to our first conversation—notebooks.  

I write; I take a break to clean a few things when my back complains about sitting.  I end up sitting on the bed and reading Writers on Writing, a New York Times essay compilation recommended from a workshop class.  I go back to writing at my desk.  It flows.  Something else I can’t place my finger on keeps catching my attention.  I put noise canceling headphones on that I’m borrowing from Kate, with a bit of Harry Potter themed ASMR with splashing water and bubbles.  I remember putting them on and realizing how much white noise was in my brain for the first time as hallucinations worsened.  Something keeps drawing my eyes.  I think it’s black—a prominent color in my most terrifying recurring hallucination, but it’s not that—yet, at least.   

Maybe it’s the cat.  Black Sabbath—Sabby—the fanged black cat, naps on the bed.  But every time my eyes dart to her, she’s still, not eye catching.  The legs of my desk, the fabric drawers, my space heater, my knee socks, my desk chair, my computer screen fully dimmed since I’m just using the device for the ASMR—something black.  It keeps coming in the corner of my eye.  I turn on my task lamp, also black, but hoping the light will dispel some shadows.  Pixel, the other cat, tortoiseshell, naps in the rope hammock swing, encased in my white canopy and starry string lights. 

Kate comes and asks if I want anything downstairs while she’s going.  More black in the corner of my eye at first—her usual attire.  I do a double take.  No, she’s there.  Water, I say.   

I get the words down a little faster, not sure how much longer they’re coming for.  I’m behind on words for Camp NaNoWriMo, hoping for my tenth win of 50,000 words or more in a month—one past win being the 100 pages for the sister event for scripts—and I’m not sure yet how many words are actually on the page without the convenience of a computer’s word counter, having not typed them up.  There are plenty of words crossed out for better ones, and random notes about the story or about things to add to the shopping list, places my handwriting ceases to know what a space is.  If I don’t write now, with the first signs of my mind fading for a while, I’m probably not going to anymore today. 

Kate comes back with the water and leaves.  The cat goes off to explore. 

I wish my hands moved faster or my characters got to the point faster.  “I’m rambling,” one of the characters confesses.  Yes, you are, I think at her, hands twitching.  The black cloud seems to be flashing in and out faster.  I should just write down a summary of the rest of this scene in case I don’t get to it.  The chapter outline lives on my computer, a picture of my whiteboard and some added notes, but it’s missing snippets of dialogue and action that have just come to me as I approach them.  I add more notes; I can’t seem to hold them in my head well anyway.  I sense humanoid movement, which means it’s probably heading down the PTSD road; I keep seeing it in the mirrored closet doors next to my desk; I have that distinct sense of something behind me and turning around clears it for only a moment.  

It’s strange to worry about not being able to think.  Day to day, it means not holding where this scene is going only in my head, just in case my mind goes mostly out for a few hours and comes back without those ideas.  It means a bit of an obsession with certain paperwork. 

To be fair, reading Five Days at Memorial would give anyone an obsession with living wills, and I’ve gone and succeeded pro se in probate court with no will recently enough to have it in mind.  Those aren’t really the papers I’m worried about yet. 

Right now, it’s mostly a piece of paper in the back of my notebook, my little “SHTF” paper.  The sort of things I wish I had written down before the blur of my one abrupt psych ward stay.  Emergency contacts. Basics.

Cats—Sabby—a black blob in the bed—no, Sabby’s on the carpet now—the blob flickers out.  I glare at where it was, mostly over knowing I can’t see my psychiatrist for over three weeks to keep it flickered out.  

I called my psychiatrist first thing Monday morning after I committed to calling, because I’m psychotic but not irresponsible—fear of irresponsibility due to my mind fading out perhaps fueling those papers and other things. 

I put the appointment on one of my multiple Google Calendars.  Kate once said I run my life like I’m a startup CEO rather than a housewife writer with some real estate.  I might just be paranoid.  She agrees to drive me to the appointment.  I don’t drive and while I keep tossing the idea around, I don’t want to one day swerve around a dog that isn’t there, like the one that accompanied me on my walk the other day, holding an also hallucinated leash in her mouth as she trotted next to me like it was helpful, flickering and then fading entirely by the time I got halfway to my destination. 

My therapist has had no luck finding me someone who knows more about psychosis on the therapy side, while I wait on meds, and neither have I.  She says the laws apparently changed, according to a coworker of hers, and she’s allowed to treat it now, but no more knowledge qualified than she was before.  I’m waiting on some books, library and mail order, my finds and my therapist’s, and enjoying JSTOR’s pandemic discounts, if research is only a grab in the dark for that responsibility and control.  One book I’m waiting on is My Month of Madness—a paranoid long shot for usefulness, but autoimmune has definitely been thrown around before, and after months of pain turned out to be a rare manifestation of toxic black mold poisoning once, I try to not dismiss rare diagnoses out of hand.  Yet I don’t want to fall into the “letting WebMD convince you that you have a brain tumor” trap.   

So honestly, I am mostly still at waiting, which is a lot of what treatment is.  You’d think I’d be better at it by now.  Waiting for the black blobs to get too consuming, waiting for my appointment, waiting for books.  I have many virtues but patience and sanity are not among them. 

On Farrah and Treatment

I swore when my shoulder cramped, which was interesting, because I’d kind of assumed I was nonverbal at the moment, the way my thoughts flowed or didn’t and a familiar feeling somewhere in my throat, though I hadn’t tested it. 

I couldn’t blame my shoulder for cramping; my disorientation at speaking came with the realization I’d been lying on my office floor staring at the very bottom of my bookshelves again. 

Against my back, I felt Farrah, my recurring puppy hallucination, slump, and heard her whimper for attention, wet nose near my neck.  The theme of the morning’s tactile hallucinations seemed to be—weight.  Farrah’s dense little body in my hands, slumping against my back in the same manner the cats did, cold paws pressing at spots on my lap.   

Just to spite my saying to my therapist yesterday that the tactile and visual hallucinations didn’t line up and Farrah teleported away if I tried to get close, the hallucinations started to line up, and she started wanting to cuddle.   

She’d been clingy all morning, and while she didn’t talk, I felt or knew her thoughts in a way that was hard to explain—the way you knew the facts in dreams that were never presented in a sensory manner.  She was disheartened by my therapy video chat yesterday that came to the conclusion—I might need to go back on meds.  Probably, in fact. 

I’m not trying to get rid of you, was what I thought at Farrah, because this was stupid.  She wasn’t real, and so wasn’t sad that I was trying to stop seeing her—and honestly, she was the least of my issues I was trying to stop seeing.  Her behavior was just the manifestation of my own mixed feelings about likely going back on meds. 

My old psychiatrist’s office wasn’t open on weekends, though, and there were no calls to be made just yet.  So Farrah—claws pattering on the hardwood and somersaulting clumsily down the stairs and getting stuck in the legs of my desk and trying to eat the real cats’ food—kept me company all morning and into the afternoon.   

I found myself editing a picture I’d found online that kind of looked like her, to get the image closer to right, as if trying to appease her—see, you’re not going away, you can live in a picture, I can still know what you look like, even if it’s in a healthier format. 

I also have developed a bit of an obsession with where Farrah came from.  I only have two recurring hallucinations currently; one is straight out of a PTSD flashback; I’m very aware of where it came from.  The other is Farrah.  Any others are not coherent enough to be called recurring.  Those little imaginary flashes of light, flips of still objects, white noise I can’t pin down. 

The only real dog I see regularly looks, sounds, feels, and acts nothing like Farrah.  I can’t figure out if Farrah is my mental manifestation of dog or puppy or golden retriever or cute or… what word my brain might have decided to attach to, that conjured this particular image.  I’m not much of a dog person; that’s why my two real pets are cats.  Google told me what Farrah meant—I know no real Farrahs and have no personal associations with the name, its origin in a language I don’t speak.  I keep staring her down, thinking: Why are you here? 

I get at most a wag of the tail or a yip back. 

It’s a big question for a little puppy that’s not even real.  

Talking about it in therapy was strangely disheartening to me, too, because those closest to me are very used to the quirks of my physical and mental health, or at least know reacting strongly isn’t going to change it.  I forget how concerning certain things sound to the average person, and I’d been out of touch with my therapist for a bit there, when I’d been doing well. 

Also disheartening was the fact that, as my psychosis spikes up again, my therapist, an MFT, is not really qualified to treat it.  Therapy is not the front line treatment for schizophrenia as it is—medication is.  It’s an issue we’ve discussed before.  I used to have a second therapist, the psychologist who initially diagnosed me, who my therapist referred me to shortly after I started seeing her in 2015, but the psychologist sadly passed on most of a year later, and I haven’t had that second person to treat that side of my illness since. 

I can write up new medical files and go back to meditation and read more psychology books and call my psychiatrist and go to my current therapist and do some therapy workbook activities and all, and I have—but having a qualified professional to talk to is a good resource.

But, hard to find.  The only name my therapist came up with off the top of her head to bring in didn’t take my insurance.  I’ve had many nightmare therapists and I’ve had many who were good people who admitted they were in over their heads.  The internet told me that my old psychologist, the one who passed four years ago, is currently accepting new patients. 

The only real thing to do is maintain routines and wait, and wonder if it would work if I carried clumsy Farrah down the stairs.