psychologists – Page 2 – The Schizophrenia Diaries

July 6th

Today marks the three year anniversary of discovering my father’s death, and it’s the little things, really.

I try to fall asleep the night before the anniversary. My wife types on her computer in the other room peacefully. Here, it’s dark. I know, I just know, that if I roll over, face the even darker spot, I’ll see the corpse there, behind me. And my body shifts uncomfortably the way it does when you just kind of want to roll over, but I ignore it. Nope. Not today. It’ll be there. I know it.

But, like a child told not to peek, I can’t help myself. I glance behind me. Within the split second, shadows take on shapes—an arm here, a leg there. No. I turn my head back, heart pounding. I can still feel the maggots on my skin, but only on my back, and I know, I just know, that if I glance again, they’ll be everywhere, everywhere, everywhere.

…

In the morning, I almost forget, somehow. I have WiFi and cellular turned off at first; my laptop is off off; I haven’t adjusted the building toy like number blocks in my little Wizard of Oz calendar in my office yet, and I almost forget, somehow.

I’m tidying, when I come across the notecard I left out for my wife last night. Among other reminders, I’d added a dry, Happy birthday, Farrah.

Farrah—my schizophrenia tamagotchi, my recurring puppy hallucination—let me know—in the way that imaginary dogs let you know things, like when you realize something in a dream—last year, that July 6th was her birthday. The anniversary. She’d appeared for the first time around the one year anniversary, with the collar whose bright red color hovered over it, with the name tag I saw as a mental flash that read Farrah for reasons I still haven’t figured out. So the timing was about right.

But what do you do for an imaginary dog? I try to telepathically beam her some imaginary biscuits, in the bright white void stored in my brain I imagine she retreats to when she’s not out here with me, projected onto the real world.

I whisper it out loud. “Happy birthday, Farrah.”

…

I don’t own a lot of memorabilia items at this point. But one of them is the purple dress.

I think it’s noble, to keep it, really. I mean, you can’t just donate cursed items to Goodwill, or let them run free in a landfill. Some innocent child could find that, Jumanji style, you know.

I was wearing the purple dress when I found my father. I was wearing the purple dress when I scrubbed my hands raw next door. I was wearing the purple dress when I scribbled a police report. I was wearing the purple dress when the coroner said, “You look really young.”

I only wear one thing at a time for various reasons, and at the time, I was wearing that dress, for about a year. It was a simple v-neck, short sleeve, knee length dress. I owned it in many colors. When even the color choice seemed like too much, I cut down to just the green, because it was my wife’s favorite, because it brought out my eyes. I wore just the green dress for another year.

During that year, my grandmother died. When the end was coming—weeks after the beginning of a pandemic—I headed over to her house—the one I’d scrubbed my hands raw in, written the police report in—wearing the purple dress, and having packed other colors, because I didn’t want the rambunctious dog in the house to ruin one of my current, green dresses.

Grandma was unconscious, had been for a while, and I’d said what needed to be said, made my peace, but I was ready to simply be there, as I told my mom when I was heading there.

Grandma died while I was in the car, driving there from my house a mile away.

I wear something else now. I donated all of those old outfits eventually. Except for the purple dress.

…

I think I’ve grieved my father twice, really.

I remember this dream I had in which my best friend died. It was a form of a PTSD dream after my father did die, and the striking thing about the dream wasn’t the death or the gore—there was none; they died off screen, so to speak. I was worried about them, in the dream; I was at a family party, and many people who are deceased in the real world were with us without question, but I just kept noticing their absence. They were on their way, from work, across town, which they usually commuted to via electric bike. But they were late.

In the dream, I finally thought to check my phone, to look for them on Find My. Even though it wasn’t real, I’ll always remember the way my stomach sunk when I saw their phone’s location was a funeral home. There was an accident. They were gone. It was being processed as evidence.

The dream, after that, was a montage. Days, weeks, months, years of unimaginable grief. Talking to their parents. Going through their things. Therapy. Anniversaries. Grieving.

I woke up with a lifetime of trauma I hadn’t endured, of grief for someone who had never died.

I did the same thing with my father, in a way; I grieved his death once before he died, in the waking world. In a way, I grieved him when my parents divorced and I went with my mom, too—just his presence.

But, the grieving his death.

It was October 2nd, 2017. I woke up in a dorm in Cambridge I wouldn’t live in long and checked my laptop half awake. By the time my eyes opened fully, I was in the hallway, desperately searching for someone who could help me, even though no one could.

The news.

It was everywhere.

Deadliest mass shooting in American history.

Blocks from home. Blocks from home, thousands of miles from where I was, pleading for help.

My father wasn’t a big selfie kind of guy, but he’d sent me one just two days before. Working this stupid country music festival all weekend, he’d texted, grinning widely for the camera in a spotlight basket high over the ground. Behind him, Las Vegas Boulevard. Behind him, a window in Mandalay Bay. Most haunted image I’ve ever seen.

No.

It took hours to get a hold of him. In those hours, I lived a lifetime of grief. I worried for almost everyone I knew, remembering how to breathe every time someone marked themselves safe online, then forgetting again when I realized how many people hadn’t.

I forgot to breathe sometimes for weeks, until I landed in a psych ward, and then, finally, back home.

Home, where my father had been, fast asleep.

He had, impulsively, taken that night off.

…

I don’t watch TV, really. But not long ago, I got the urge to rewatch Wall-E.

I didn’t get far. But I thought about the movie a lot.

Dad loved Disney. One of the last texts I ever sent him, one of the few that sat on his phone, undelivered forever, after he wasn’t there to see it, before I realized I was texting the void, was that my then girlfriend, now wife, had finally seen Wall-E.

She was drunk, after a friend’s housewarming party, and to sober her up, a friend and I sat her down in front of the TV we owned back then, with food and Gatorade and Wall-E, which is, I must say, still captivating, darkly beautiful. It has no real dialogue for most of the movie, but there is so much story, and new things to look at every time you see it. New items grab your attention from the endless landfills Wall-E explores (but there’s no cursed purple dress). It’s probably good to watch drunk, but I’ve never been drunk.

Dad loved Disney. He loved Wall-E. The movie, the adorable robot. So I told him that she’d finally seen it, because he considered it a crime otherwise.

He never heard the news, though.

Mom and I talk sometimes about the things we wish we could say to Dad, to Grandma. We’ve both made our peace with certain things. Do we really need to say I love you one more time? No. It’s, I finally found the water shutoff we were always looking for, or, She finally watched Wall-E, like right after you died. Also, we’re married now. By the way.

…

Today.

Later, my mom takes her car in for a tuneup, and I give her a ride home. We talk about the date. I lit a candle for your dad. Happy birthday, Farrah.

We stop before I continue on to my house, and we get out of the car to hug.

And I appreciate every moment we have together, but today, especially, I hug her one second extra long and one squeeze extra tight. I go home and hug my wife one second extra long and one squeeze extra tight.

And, for the people you love, I really hope, today, not tomorrow, you do the same.

Sundowning, and Daydreams vs. Hallucinations

Recently, I read The Productivity Project by Chris Bailey. It’s a great book, and it emphasizes managing your time, attention, and energy. One of my key takeaways was to stop fighting my natural sleep patterns, to shift my schedule, and go to bed and wake up a little later, like my body wanted.

However, this meant sacrificing the hour of writing I had scheduled early in the morning, before brunch with my wife. This didn’t feel like a huge loss, though. I frequently didn’t get much done in that hour, when my body wanted to be asleep. I had to fight for every word, and it wasn’t actually when most of my writing happened.

So, I looked to reschedule my official writing time according to the book’s principles, figuring out when my energy naturally peaked. Except I realized that I didn’t want to write at that time. I wanted to write when I had less energy, when the daydreams that fuel my fiction are sleepier, more like full dreams. I wanted to write at night, perhaps right before the daily dose of my antipsychotic, when its concentration in my body would theoretically be lowest. But not in the morning, too tired to get words down at all—which also sometimes happened at night—when my daydreams were too hazy, not vividly dreamlike.

I ended up not structuring my writing time via strict daily timeblocking at all, for now preferring the flexibility of a monthly goal, the ability to separate sleepy, creative, psychotic daydreaming/brainstorming with pen loosely in hand and the part where I actually get coherent paragraph after paragraph down on paper. But it was an interesting observation.

I more recently started reading another book: Hallucinations by Oliver Sacks. From that, I learned about sundowning—a behavioral phenomenon that occurs in people with Alzheimer’s and other conditions. It involves symptoms of confusion and distress that start around sunset and continue through the night. It can also cause hallucinations and occur in people with psychosis.

I found that interesting, as someone who had recently expressed a preference for at least brainstorming at night—because my semipsychotic daydreams ranged closer to full psychosis at that time. Even more so than in the morning, when my daydreams didn’t seem to have the same grip despite my initial theory of low energy being the important part. I also pondered the stereotype that writers are night owls.

Additionally, I’ve long struggled with determining what my daydreams are. Just a bit of creative type syndrome? Maladaptive daydreaming? Part of my actual psychosis? I’ve had a lot of creative type friends, though, and my daydreams don’t work like theirs do, much more all consuming. They fit well into the maladaptive daydreaming category, but I still feel like they go a step further; I don’t only struggle to control compulsively slipping into daydreams, but the contents of them also slip out of my grasp. Thus I have always defined them as semipsychotic, though they also don’t fit the way I describe my more typical hallucinations.

But in reading Hallucinations, I stumbled across something else: the difference in eye movements between seeing, normal and maladaptive daydreams, hallucinations, and dreams. While your eyes tend to scan real areas and track real motion, most people’s eyes go still—glaze over, zone out, if you will—when they are visualizing or daydreaming, unless maybe it’s something very dynamic, or if it’s scanning a visualization of certain kinds of information. In maladaptive daydreaming, this is also common, though some people sometimes truly act out the daydream, usually reserved for private situations. The eyes move—while eyelids are closed—when dreaming, during the REM (rapid eye movement) stage of sleep (current research suggests this is part of processing new/changing imagery, not scanning visuals in dreams).

When hallucinating, the eyes often move as if seeing something real. This has been studied a lot in terms of Charles Bonnet syndrome (visual hallucinations connected to loss of vision), as it has interesting implications about the difference—or lack thereof—in seeing versus perceiving.

So I tried a few informal experiments. I asked around, watching as others visualized/daydreamed, and asking what they saw when I did, and a few times, I sat in my office, left a recording Zoom meeting with just me in it open on my laptop in front of me, and sank into my daydreams, then watched the recordings and what my eyes did.

While I had no dramatic behaviors to note—I didn’t fully act out the dream, and didn’t do anything consciously—my eyes, always open, definitely moved. Remembering what I’d been daydreaming about, I noted that they sometimes tracked motion within the daydream, from roughly the perspective of the point of view character (all in third person, but kind of flipping back and forth at times the way the camera does in a movie)—following a character scrambling away in a chase. Or, my eyes acted out the way the observed character’s eyes darted back and forth looking for a direction to run. Different bits.

But this helped confirm for me that my daydreams might go a bit beyond, and I was clearly able to observe that they did so more at night, in a way that made sense as a form of sundowning (among other evening symptoms—a heavier leaning towards more typical hallucinations, mood symptoms, dissociation, PTSD flashbacks, hypervigilance, the negative symptoms of schizophrenia, catatonia).

It can be very beneficial, validating, to find the word for something, a more objective way to look at it, to find out that other people do it, too, even for phenomena I had already casually observed.

So, I was glad to come across these things.

Want to Know About Schizophrenia? Ask a Schizophrenic

Recently, I taught for my first conference. In advance of the event, an organizer posted class highlights—the details of a particular class offered at the conference—regularly on social media. The comments section was usually quiet, maybe positive.

As it happened, one day I stumbled across a class highlight where the comments section wasn’t going so well. It took me a second to realize that the class highlighted was mine.

My qualification was questioned, despite being in the post. It was a class on being an ally to alternative sexuality practitioners with schizophrenia. My qualification was being an alternative sexuality practitioner with schizophrenia.

The organizers had stated in many places that the conference presenters were mostly not mental health professionals. Most of us taught from our own experience. More was explained in the comments section. I didn’t know the commenter, so it wasn’t personal.

So why was I the only one who had this issue?

Probably: I was teaching the only class at the conference about psychosis.

The commenter cited that one could do a lot of harm, responding to psychosis without knowing what one was doing. And that’s very true—that’s a main reason I teach that class. But that was true of almost any subject at the conference. What I saw implicitly referenced was the seriousness of psychosis, or rather, the stigma. Even within a class list for a conference on mental health and alternative sexuality.

The stigma particular to psychosis is real.

But, okay, let’s go with it for a second.

Does having schizophrenia make me qualified to write and teach about it (at this level)?

Yes. I think so.

Why?

Because, while it’s subjective, I can tell you what schizophrenia feels like from inside it. Because all medical literature and research on schizophrenia relies on people like me being studied. Because even the average mental health professional can’t give you first hand information on it.

Now, any diagnosis alone does not give me clear communication skills, or knowledge of the hard science, or so on. It just gives me experience to speak from—an experience that science studies and documents en masse, trying to figure out why, trying to figure out how to treat it, along with the physical tests and so on. I get other skills and knowledge from practice—teaching on many other subjects—and lots of research.

But I am qualified to talk about the first hand experience. Psychosis is in large part about your relationship with reality. Therefore, my perception of reality—versus others’ perception of reality—at any given time, is half the picture.

You might see someone standing in the middle of the street, yelling and beating themselves with a lint roller until they bruise, or someone curled up motionless on the floor, staring at nothing, or someone calling an invisible dog and holding nothing like it’s a leash, or someone vibrating in terror while fixated on an empty space in a bed, but I’m living something else.

I’m feeling the world crash down around me, I’m off in another world with my characters, I’m trying to get the whining dog to cooperate for once, I can see (and smell) the corpse in the bed. And that’s a lot of context, and only I can fill that half in for sure.

Any mental illness, really, is, by nature, hard to get the full picture of from an external perspective alone.

And many schizophrenics struggle to share their perspective—it comes with the territory. On my bad days, I can’t share mine. On other days, thankfully, I can.

But ultimately, if you want to know what schizophrenia is really like?

I’d ask a schizophrenic.

How to Be an Ally to People With Psychosis

(This is heavily based off my class “Schizophrenia in the Scene”, on how to be an ally to alternative sexuality practitioners with psychosis. I’ve adapted it in written form for a more general audience.)

So: how to be an ally to people with psychosis, in several contexts, by a schizophrenic.

Psychosis 101

It can be hard to be an ally if you don’t know the basics. So let’s go over a few things.

Psychotic Disorders

First, let’s look at some of the most common types of psychotic disorders. We’ll go over some more specifics in a bit.

Schizophrenia. Schizophrenia is probably what you think of when you think of psychosis. It’s the disorder I have. Symptoms include hallucinations, delusions, and negative symptoms. While the average onset is the late teens to early twenties for men and late twenties to early thirties for women, my symptoms officially appeared around the time I turned fifteen, and I was officially diagnosed at seventeen: early onset is possible, but it’s extremely uncommon to be diagnosed under age twelve or over age forty.
Schizoaffective disorder. Schizoaffective disorder is a disorder with chronic symptoms of both schizophrenia and a mood disorder (either bipolar—with manic and depressive episodes—or depression).
Delusional disorder. Delusional disorder (formerly known as paranoid disorder) is defined by the presence of delusion, though they don’t usually have as many behavioral symptoms. While hallucinations may be present, they are always related to the delusions.

There are other types of psychotic disorders, and other disorders that can have features of psychosis. For example, schizophreniform disorder has all of the symptoms of schizophrenia, but only lasts one to six months.

Types of Schizophrenia

Within that first diagnosis—schizophrenia—there are several subtypes. Here are some of the most common.

Paranoid. This is one you’ve probably heard of, and it’s the kind I have. It’s defined by unreasonable suspicion and paranoid delusions.
Disorganized. Disorganized thoughts, speech, and behaviors. These symptoms tend to appear in all kinds of schizophrenia, but especially here. Thinking may feel complicated, and speech may come out as word salad, or gibberish. People with disorganized schizophrenia may have strange physical quirks or a lack of certain mannerisms at all, or mirror the person they’re with. Hallucinations and delusions tend to be less pronounced.
Catatonic. This type is defined by catatonia—appearing to be in a frozen, statue like state (silent, still, staring, etc.) I’ve also experienced this episodically—primarily early on. Or, you may experience random hyperactivity (fidgeting, mirroring the person you’re with).

(Note: I’ve seen that the correct phrasing has technically changed from, say, paranoid schizophrenia to schizophrenia with paranoid features. So bear that in mind, but I’ll say I’m not super fond of that phrasing. As someone with a lot of catatonic symptoms at times, I used to say things like paranoid schizophrenia with catatonic features. So what now?)

Symptoms

I’ve mentioned many symptoms above, but let’s dive into what they really mean.

Hallucinations. Hallucinations involve seeing, hearing, tasting, feeling, smelling, generally sensing something that isn’t there. While hearing voices is commonly referenced, hallucinations can involve all senses and also include object distortions (think Alice in Wonderland), and be more or less vivid. You may or may not know you’re hallucinating. I experience all of this, and also have specific recurring hallucinations.
Delusions. A delusion is something you believe that isn’t true. You may believe that someone is out to get you (paranoid) or that you’re actually someone famous (grandiose). You may not believe it in full—just have it as an intrusive thought you can’t get rid of—or you may believe it entirely. I tend to have these episodically—usually triggered by a change I’m not expecting, like an object not being where I expect it to be, or vice versa—and generally be paranoid. Some delusions or categories have their own names, like grandiose or paranoid delusions, or Cotard’s delusion.
Disorganized speech and behaviors. As mentioned, disorganized speech—word salad/gibberish that may sound coherent to the speaker, but not the listener (sometimes coming from disorganized thoughts) or going nonverbal—and disorganized behaviors (freezing, fidgeting, staring, flat affect/monotone, mirroring/parroting) can occur as part of psychosis. I experience these at times, especially when I get too tired. A lot of these also cross over with autism for me.
Negative symptoms. Negative symptoms are a lack of usual functions. This can mean executive dysfunction—struggling with normal self care, jobs, study, and activities. This can also mean flat affect and social withdrawal. This can also mean a lack of the ability to feel joy or feel interested in something. I also experience these, up and down.

Treatment

So, if someone is experiencing psychosis—what now?

Medication/antipsychotics. The front line treatment for psychosis is medication. You cannot truly treat psychosis with counseling or therapy alone. Medications designed to treat psychosis are called antipsychotics and come in many forms. With a psychiatrist’s supervision, you might try several before you find the med(s) and dosage(s) that work best for you, keeping an eye out for side effects. I take my antipsychotic med as a pill at night (it also helps with sleep). Other meds might be useful, and antipsychotics can also treat nonpsychotic disorders. I was on some antipsychotics before I experienced psychosis, for anxiety and sleep.
Therapy. Therapy can still be useful to help cope with psychotic symptoms and any other issues or disorders. For meds and especially for therapy, the key is to get the right one. Get the right medication (or combo), and the right therapist. Not every therapist is someone qualified to treat schizophrenia, someone you’ll get along with, or even very good at all—some can actively make things worse. I’ve seen many. Make sure you find someone qualified, who you like and you think really helps you. It’s not necessary, but it can be very valuable. I was in and out of therapy from 2012 to 2020. I’ve been out since, but have considered going back if I could, well, find the right therapist.
Psychosocial approach. This is a therapy like approach that focuses on functioning in the world with psychosis, including family education and counseling, social skills training, occupational therapy, help with accommodations at school or work, and being as independent as possible (transportation, housing, etc.)

Interactions

Now that we’ve covered some basics, let’s talk about how to interact with someone who experiences psychosis, whether they’re talking about the experience or struggling right now.

First thing’s first: don’t assume you’d know if that person experiences psychosis. Don’t invalidate them by saying things like well, it’s clearly not that bad or no, you don’t. They would know better than you do. Also, stay away from lines like oh, I wouldn’t have guessed—it’s not necessarily your business, and that may or may not actually be a compliment; it can sometimes feel invalidating that it’s not apparent. Framing it as a compliment that it’s not apparent can also be a form of shaming the invisible symptoms. Also, don’t assume that the person is high functioning, not struggling, or even having a good day just because they’re having a nice interaction with you. You don’t know what they’re going through. I get this a lot as someone who passes as “high functioning” most of the time.
Don’t treat it as extreme. Psychosis is often seen as the deep end of mental illness. While there are some valid reasons for it, don’t use this as an excuse to be othering. It doesn’t always feel great when someone says “you can even live a normal life with psychosis” or makes a comment to someone else like “at least you’re not psychotic”.
Don’t stereotype. Not all people who experience psychosis experience it the same way, to the same extent, or are the same person, or feel the same way about it. Don’t lump everyone in together, and don’t throw things under the psychosis label that have nothing to do with psychosis, like certain political beliefs.
It’s not a magic power. Please, do not tell people who experience psychosis that it’s a magic power, a religious calling, a spiritual experience, that they’re psychic, that they can see the future, the past, things you can’t, another lifetime, just—any of it. If it belongs in a house of worship or a science fiction/fantasy novel, just don’t say it. It can lead to an acute psychotic episode and fuel delusions and hallucinations. Whatever you believe, please keep it to yourself in this case.
However, keep in mind that not everyone thinks their psychosis is all bad. I’ve written before on why I wouldn’t cure my own schizophrenia if I could, and view it as a crucial part of my creative work. Don’t force this as toxic positivity onto someone, but don’t necessarily go, “Oh, that must be so horrible, I’m so sorry,” either.
Be aware of common psychosis triggers. As mentioned above, religion/spirituality/science fiction/fantasy kind of elements can be a big one. They also might be a special interest of that person’s—I love talking about those things at times—but tread carefully, ask first, and if they’re not up to it that day, they’re not up to it that day, even if it’s their favorite thing at other times. Other things: conspiracy theories, anything reminiscent of The Matrix or Inception, any “it was all a dream/simulation” etc., absurdist humor (“Cat? I don’t see a cat,” when there’s a cat right in front of you.) And if they ask you to stop, do it right away. Don’t continue on with the subject. Don’t try to explain it. Don’t apologize over and over; it puts the burden on them to keep interacting about this subject. Move on. It’s probably already a little late.
Stay neutral on delusions. Don’t confirm them—they’re not true, and this makes them harder to shake. It also makes you a known bad source of information if that person comes out of the delusion later. Don’t deny them while the person is in them—this will just lead to frustration and confusion. Stay neutral. “I understand you think that.” I’ve had delusions that the person I was talking to didn’t exist/was a hallucination. I know it can be hard to stay neutral, but it’s always better to nod and smile and stall a little if need be than to take a side.
Reality checks (and why they probably don’t work). Look, trying to reality check a hallucination is much more complex than you think it is. First, you’d have to check all five/more of your senses. Check every single thing affecting those senses in the environment, every object. Check if all of those things are oriented properly, the correct size, color, texture, distance—you get the idea. “You see the cup, too?” “Yes.” But it’s a completely different size to them. Flash of light? Well, maybe you just missed it—or maybe they’re hallucinating. “Can you touch it?” Well, yes, sometimes visual and tactile hallucinations do line up. Hallucinations can also distort things like reflections and pictures; these may or may not function as reality checks. This tends to be a powerful instinct for people—reality checking—but proceed with caution. One yes to, “You see X, too?” doesn’t mean the person is necessarily psychosis free. (Life hack: good noise cancelling headphones = auditory hallucination check.)
Say what you mean. On both sides. Remember that words mean different things to different people. For example, my wife and I discovered that when she said, “I’m tired,” she meant she had the vague urge to go lie down and rest. When I said, “I’m tired,” I meant that I was a few minutes at most from blacking out/was a fall risk/”Catch me.” That can be a pretty important distinction for a word people use all the time.
Person-first language. Person first language (ex: a person with schizophrenia rather than a schizophrenic person or a schizophrenic) is commonly praised as a good default. And it is. But if it’s not that person’s preference, it’s not that person’s preference, and you should respect that, just as they/them are good default pronouns, but once someone tells you their preferred pronouns, you should use their preferred pronouns. And beware of clearly awkwardly rearranging a sentence around first person language, making it a bigger deal than it is. Think of this: if you wanted to say I was a writer, you’d probably just say, “Hannah’s a writer,” right? You wouldn’t clumsily tiptoe around Hannah is a person who writes, because it’s no big deal that being a writer is part of my identity. But psychosis probably trips your “I should use person-first language for this” button if you have one of those. But why? Are you deciding for me that it’s not part of my identity, or that it shouldn’t be something I identify with? Tread carefully here, and use the preference of the person in question.

Events/Groups

Considerations for event planning and social groups.

Be honest (about your scope). If you’re running anything that calls itself a support group, a safe space, a mental health/illness space, therapeutic, things like that: be very honest about what you can actually support. If you say you welcome all neurodivergent people, remember that it covers anyone who’s not neurotypical, not “anxiety, depression, autism, ADHD, trauma”. If you’re not actually equipped to handle someone with psychosis—just be honest. It’s much better for me to read in advance that an event or group is not meant for me (in a non judgmental way) than to show up and get all of the mistakes from the section above, which are very common in groups that are just not prepared.
Sensory overload. For people with psychosis and many other mental illnesses, sensory overload is a real thing at events. Consider adequate, non flashing, neutral lighting, a quiet space with limited background noise, a lack of strong scents, etc.—or at least a space at your event where someone overwhelmed by those things can catch a break or socialize more easily. In the case of psychosis, sensory overload can also start with sensory experiences that only that person is experiencing—what might not seem like a lot to you, could be the straw that broke the camel’s back.
Physical safety. If there are steps, loose cords, things like that, in your event space, where your usual recommendation is watch your step, or things that require being very cognizant of your surroundings—see if there’s a way you can make that safer for those who might not be so easily in touch with reality. If I’m dissociating, I’m not watching my step. Or, objects may be distorted or hidden by hallucinations. Maybe a spare shelf can double as a ramp on a step or two down into a living room pit, or you can tape those wires down securely.
Privacy. If someone reaches out to you about being a group member with psychosis, keep it confidential unless they explicitly tell you otherwise. Just because they’re telling you doesn’t mean they’re “out”. Be willing to talk about related concerns privately. At an event, places where guests could get a moment alone or with a trusted loved one are very welcome if someone needs a minute to calm down.
Reach out. Ask what you can do to make your event more accessible—with the opportunity for private, anonymous answers. Without being pushy, reach out to group members who have been quiet lately; maybe they just need a nudge or a reminder that they’re welcome.

Relationships

Considerations for family, partners, close friends, etc.

Advanced (mental) health directives/power of attorney. These are documents that (at least where I am; there may be different versions available where you live) outline the healthcare you would like to receive (or not) in advance, and who can make decisions for you if you cannot make them for yourself. Consider adding people you trust here.
Emergency contact. Adding trusted loved ones as your emergency contact(s) at work/school/etc., and vice versa. Also, keeping a card in your wallet of your important medical information (medications, conditions, allergies, etc.) and emergency contacts (name, relation, phone number) can be a life saver. It has gotten me out of a bad situation where I was nonverbal or catatonic more than once.
Subtle “help” cues. It might help to establish a way to cue your loved one in to the fact that you’re having a problem, if they can’t generally tell/you can’t always communicate that with normal signs. It could be a subtle way to signal for help in public (or a visual in a loud room), a hand signal for if you’re nonverbal, so on—or different ones with different meanings.

I hope this information helps out a little.

Vacation Memories, or Not: Early Signs of Psychosis

When I was fourteen, my mom and I took a trip to New Jersey. We visited family and friends, saw some sights, all that good stuff. It was a great trip in a lot of ways and I have fond memories of it. I reminisced about it to my wife recently, and I recalled two things I frequently think of from that trip that go beyond vacation memories and into Things To Ponder territory.

One:

It was a several hour long flight to get there, and to be honest, I don’t remember much of it, but it meant a lot of transportation downtime, which means I was probably doing a lot of daydreaming. Many of my best plotlines and revelations were born of this kind of time. The earliest born recognizable plotline from the final version of Contrivance (which I published recently) was born on a roadtrip to California for my wife’s job. Another important revelation, same project, on a roadtrip back from a Lake Tahoe vacation with family and friends. I reframed “What Happened Last Storm” on the way to San Francisco (which was reposted recently).

Anyway, after the flight, I believe we went straight to visit my grandparents, the primary reason for the trip. And after that is the part that I remember clearly. Let me tell you this: there is not a single left turn in the state of New Jersey. I am sure of it. I am pretty sure we had to go to New York to turn around after missing the (okay, one) left turn to get to our hotel. So it was a long drive.

Apparently fresh out of the usual daydreaming material, my mind began to wander further. Daydreams started to wander a little too far ahead of my conscious thought train, and I abruptly slammed on the mental brakes.

Where did that come from?

The daydream train had deviated from what would ever truly be canon for the nascent project. Into vaguely uncomfortable territory I couldn’t really identify at the time. It was far from a sexual fantasy or anything, but something about it had the flashing warning light of don’t think that. I’d now file it somewhere in the alternative lifestyle category. But I’d barely even heard those words at the time. And, interestingly, a lot of my daydreams already went into what I would now call that category, going as far back as I can remember, to my earliest memories. So why was I suddenly worried at that moment? Doing the same plotline with new characters? Fledgling awareness of the taboo? Or increased paranoia?

I believe the important thing isn’t the content of the daydream—honestly, I don’t remember the details—but the slamming on the mental breaks, the don’t think that. Thought policing myself. I stopped daydreaming and sat there in the car and pondered that. Why was I policing my own thoughts? Did I believe others around me could hear them? That some form of God could hear them? That bad thoughts inevitably led to bad actions? (There’s also probably a whole post’s worth on why did I instinctively feel that content was taboo while barely understanding it?, but that may be better suited to a different blog.)

I decided, sitting there and reasoning with myself, that I supposed there wasn’t a reason I should police my thoughts. And I indulged the daydream and mentally crept forward. Still, I found myself slamming the brakes on daydreams like that under various circumstances. If I was alone and someone entered the space, I slammed on the brakes, like abruptly closing embarrassing computer tabs when you realize someone’s standing behind you. So on. Now, I wasn’t very good at the brake slamming—that’s kind of the maladaptive part—but, I tried.

This whole thing resonates a lot with—well, a) maladaptive and dissociative daydreaming perhaps over the edge of psychosis in itself, but I talk about that going back to my earliest memories a lot here, but also b) paranoia—as in, paranoid schizophrenia, one of my eventual diagnoses. That paranoia—the thought policing—creeps in to this day, though I have so few secrets these days, even if I believe someone can hear my thoughts, I don’t actually worry about much.

Here’s the interesting thing: I had only in the past six months or so, at the time of the trip, been diagnosed with so much as anxiety. I had no known psychotic symptoms at the time. When I started on medication for the anxiety, my dad even reacted badly to the first prescription recommended, because it was technically an antipsychotic. He thought this whole thing was already getting out of hand. I’d gone from “a little too stressed out” to “psychotic” in no time at all in this psychiatrist’s eyes (even though it’d been explained that the psychiatrist understood I had only anxiety and was giving me this drug to treat me for anxiety and sleep, no matter the primary use of it). Point being, I was not psychotic at the time. Or, so we believed? And I was early onset as it was—definitive psychotic symptoms around the time I turned fifteen, diagnosed at seventeen. The average onset for schizophrenia in women is the late twenties to early thirties.

But some of my symptoms do go further back than even my anxiety diagnosis (which, to be fair, may have been long overdue).

Exhibit two from that trip:

My mom and I went to the Museum of Natural History. I hear it’s a really cool museum. Here’s the problem: I have no memory of it.

I remember going into NYC from New Jersey. It was my first time on a subway, all that fun stuff. I even remember arriving at the museum and I believe having food in the cafeteria. Then my memory cuts out. Then, we’re standing on the front steps of the museum on the way to meet a friend of Mom’s for food. I am having a panic attack because something went wrong on the camera and it deleted all of our many photos of the experience.

Now, that sucks for both of us and all—but I’m long over that part—I was just prone to such panic attacks at the time. (Sorry, Mom, for all of it.) But the interesting thing is I remember insisting that because there were no photos, it was like we hadn’t been there at all. I was already struggling to recollect details that had seemed very clear a moment ago. My brain insisted that no evidence meant that it hadn’t happened. The museum wasn’t quite real. I don’t think I expressed this very well, though. I didn’t even understand that anxious thought process at the time. I don’t remember what my memory of the museum was like closer to the event—I remember losing details as we walked away from it—but today at least, I’ve got nothing. I’m okay with that. A lot of memories fade, anyway. One day, I’ll go back.

Now, today, if after very obviously living an experience for several hours, I lost the external evidence of it and spiraled into panic, thinking that the whole thing had never truly happened, I would probably think I was having an acute psychotic episode, and might even be able to articulate that. It would indicate an obvious loss of a sense of reality, unable to grasp the realness of something I had just experienced. A loss of permanence. Today, I frequently use photos to keep reality real, so to speak. They ground me and provide facts.

When I’m so consumed by the image of my father dead that I can no longer picture him alive, photos ground me. Photos say, This is what he looked like. I may or may not be in a mental state where my perception of the photos (selfies, candids, quick pictures, not things subjected to editing) is that they are undeniably fact, but something in the back of my mind always whispers, They’re right.

My phone’s photo feed provides me timelines, little moments that keep large stretches of time real. Throughout the early height of the pandemic, there are pictures of interesting animals I saw at the empty park, our cats, food I made, candids of our little family in the pool, empty shelves at stores, signs announcing closings, masks left in the street, craft projects, our plants—tiny reminders tied to a specific moment in time that mean this whole year really happened. Not a weird montage from a movie. We all probably feel that way about 2020 sometimes. I just feel like that a lot.

At the time of that trip, though, I didn’t believe I was psychotic—although I knew very little about what psychosis truly was like. I certainly didn’t know how to articulate any of that. But could it have been a subtle prodome symptom, an early warning sign? Maybe. My first definitive symptoms of psychosis came just six months later.

I suppose it’s not that important now, but it’s interesting to ponder looking back.

The Limitations of Translating Daydreams to Other Mediums

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

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

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

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

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

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

I looked back at my notebook. I thought of drawing, or writing. I can’t really draw much—I’ve spent time each day this year trying to learn, but it’s slow learning, and slow to create, for me. I do believe that anyone can learn to draw if they really set their mind to it, but I just don’t have the passion for it to do so, and I do have some serious spatial reasoning issues. And I still ultimately get stills that are limited by the tools I’m using.

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

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

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

But, I find it a worthy challenge.

Being a Schizophrenic, Creative Type Dropout

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

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

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

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

“Hey,” from our teacher.

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

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

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

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

I effectively drop out just a few months later.

…

Here’s another memory.

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

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

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

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

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

Why was I going to college?

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

I… don’t want to be here.

I had never really wanted to go to college, in reality. It just seemed like a thing to do. I wanted the experience. I liked sitting around with my favorite professors over lunch, discussing this book and that. I liked forming a schedule around interesting sounding subjects. I liked creating pretty study guides, and even studying them, not to test, but to learn. I liked the culture of study groups, of library and museum trips. I liked learning, I liked reading, I liked writing. But I had almost never… liked school.

I didn’t walk into my Anthropology class.

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

…

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

So I felt like I could focus on that: being a housewife with my own projects. I published several books, and translated my nonfiction into becoming an alternative sexuality educator. I started taking a self paced online butler school course I was actually passionate about, couldn’t imagine dropping not matter how challenging it got. I talked about books with friends and did challenges together and journaled and volunteered at the library and learned and read and wrote.

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

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

And I’m more than okay with that.

My Imaginary Dog Wants Me to Be Psychotic: The War Between Creativity and Functionality

I had a weird revelation the other day.

During one of my typical late night rambles—when I’m up that late—I was talking about the way I visualize and compartmentalize parts of my mind. The filing cabinets of thoughts and library of memories. “And, of course, there’s Farrah’s Void.”

I have long wondered why Farrah, the puppy hallucination, appears to me again and again, the one question mark amongst other recurring hallucinations clearly based in trauma or the obvious.

Farrah often “appears” via somewhat mismatched visual, auditory, and tactile hallucinations, and the sixth sense, for short spells of time. But there’s one other mode of really feeling like I’m interacting with her: going to her Void.

It was more common when I first started hallucinating Farrah about a year and a half ago, around the one year anniversary of the event that gave me PTSD. I would dissociate, and rather than be in reality, or in one of my fictional worlds, or in a slightly alternate version of reality, I would “go to” Farrah’s Void, an endless white abyss containing basically me, the dog, and occasionally an object I imagined. It looked and functioned a lot like Janet’s Void from The Good Place, hence the nickname. It also got Farrah dubbed my schizophrenia tamagotchi, because it mimicked that pet-plus-blank-environment kind of game.

While I truly visit Farrah’s Void less now—sure, I can picture Farrah or her Void any time I want, but that’s not a true hallucination or dissociative experience—I feel like it’s there, like the thought filing cabinets and the memory library. I explained it as, “I almost have too much object permanence.” Dogs don’t just appear and disappear, after all. Surely, Farrah (who’s truly just a quirk of my brain chemicals) goes somewhere when she’s not with me, here meaning, projected onto the real world.

Sometimes I want Farrah to come out and visit, so to speak, and I try to tempt her with normal imagining of her that doesn’t stick like the hallucination, mental talk, C’mere, puppy…, and occasionally bribing her with a real piece of chicken or tennis ball, which I’m sure looks, y’know, totally sane to the outside observer.

But Farrah doesn’t respond to these, obviously. She primarily appears when I am upset. At first I thought this was based on being a certain level of upset, and felt invalidated when she didn’t appear at times/the right brain chemicals didn’t happen. I wondered if she was a kind of psychotic, automatic self soothing mechanism, the free dopamine of a free puppy—and I still do think she nudges me towards a form of self soothing. Then I started tying her to more of a certain kind of upset. It had to run deep, be based in trauma, grief, existential loneliness, and already be a little dissociative or psychotic.

I humorously personified—puppy-ified?—her appearances to myself repeatedly, and in my ramble that night. Y’know, she has stuff to do in her Void, I guess. Balls to chase. Treats to eat. Five more minutes, Mom. She can’t eat a real piece of chicken, anyway.

But trying to assign Farrah motives, the revelation hit me:

You’re the part of my brain that wants to be psychotic and creative, and not sane/unimaginative.

Now, there is a whole spectrum in between those things, and I am often battling with where on it I should be. I believe that psychosis enhances my creativity; but I need functionality to deliver that creative energy in a consumable medium to the world.

Paranoia (as in, paranoid schizophrenia) keeps me on edge, reminds me that death comes for us all—not to mention the death trauma I hallucinate reliving over and over—and keeps me focused on the creative works that will outlive me… or hugging my knees and rocking in terror. Lack of connection to reality keeps me hyperfocused on both my fictional characters and on the big emotional rushes of publishing another book, and less interested in the minor rushes of board games and television shows and normal socialization, things I tend to write off as distractions… yet get you through the day and create friendships. My daydreams are dissociative, maladaptive, psychotic—my characters run free, in tighter and tighter spirals until something coherent and gripping happens to emerge without me, and then I rush for pen and paper… or remain trapped in a dissociative fugue on the floor.

There’s a balance.

I tend to place medical professionals and the people who love me mostly on one side: functionality and happiness.

But that night, I realized who was on the other side:

Farrah.

Previous mentions of Farrah on this blog are kind of damning. Hallucinating her herding me towards my notebook, or being upset when I decided to go back on antipsychotics—mostly as a mirror of my own emotions.

Yikes?

And yet I can’t really blame that adorable little face (yes, she does make hallucinating tempting) for favoring psychosis, because there are days I favor it, too, days I romanticize the dysfunctional, the creative, the obsessive. But…

Okay, Farrah. I need my functionality; I need a touch of tortured artist syndrome. You don’t win, but maybe I can meet you somewhere in the middle.

Wherever might be halfway between reality and your Void.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Still. Things to think about.

Person First Language: But Who Am I Without Schizophrenia?

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

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

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

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

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

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

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

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

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

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

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

Having a firmer relationship with reality would probably bring my daydreaming out of the maladaptive/dissociative category, as I believe those are highly connected for me, daydreams no longer taking over my reality and replacing it, just being something that still feels inside my head, or at least picture in picture style visualization. This would completely change my writing process as I know it, as it’s been observed that most of it is my characters running wild in my daydreams—controlling me far more than I control them, both in demanding my attention, and in the way I absorb their traits—until something coherent and gripping happens to emerge (largely beyond my conscious control). Then, it’s just a matter of getting paper and making some last minute adjustments. Removing schizophrenia also removes writing as I know it.

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

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