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 mebeing 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 and 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. 

If you liked this post, you might enjoy my blogbooksfiction, schizophrenia related class, or newsletter. If you wish you’d seen this a week sooner, get early access here. I also really appreciate constructive feedback. Thank you!

How to Be an Ally to People With Schizophrenia, by a Schizophrenic

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

So: how to be an ally to people with schizophrenia, 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 behavior 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 feel like you generally hear “background noise” or see a few extra shadows. You may or may not know you’re hallucinating. I experience all of this, and also have recurring hallucinations, such as one from my trauma (intersecting with PTSD), and a golden retriever puppy named Farrah. It’s a mixed bag.
  • 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.
  • 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 ability to feel joy or 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.
  • 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 glass, 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. 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: 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, bipolar, 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 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 them 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.

If you liked this post, you might enjoy my blogbooksfiction, schizophrenia related class, or newsletter. If you wish you’d seen this a week sooner, get early access here. I also really appreciate constructive feedback. Thank you!

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 my other 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 important now, but it’s interesting to ponder looking back. 

If you liked this post, you might enjoy my blogbooks, fiction, schizophrenia related class, or newsletter. If you wish you’d seen this a week sooner, get early access here. I also really appreciate constructive feedback. Thank you!

On 2021

I’m very late for this, but given the “diary” in The Schizophrenia Diaries, I like to give an annual… let’s call it New Year’s (end of 2021)/(twenty-fourth) birthday update.

I made lots of writing progress last year. I launched my newsletter, my fiction project, In Blood, Our Legacy, published three books (can’t believe it), and made progress on this blog, my alternative sexuality blog, and all my fiction on Archive of Our Own.  I launched early access memberships and more on my Buy Me a Coffee. I’m still posting about twenty-five thousand words per month across my projects, and hoping to publish my fifth book soon. Wrapping up a few things and clearing my plate a little because I have so many more ideas I want to make space for and write. 

I also started teaching alternative sexuality webinars (January 2021). I taught twenty-seven classes in 2021, including events for The Eulenspiegel Society (TES), the first alternative sexuality organization founded in the United States (NYC), and Wicked Grounds, an adult coffeeshop, gallery, and boutique (San Francisco). I currently have a seven class repertoire. I launched my website for this as well, with loads of class content, now on a subscription basis, consulting, and now Office Hours. I’ll be teaching many more classes this year for lots of awesome venues. The positive response to my content has been overwhelming. This past week, I taught four different classes for myself and for two other venues, including another class for TES.

I’ll be teaching at my first conference in April, THRIVE, an alternative sexuality and mental health conference, presenting my class, Schizophrenia in the Scene, on how to be an ally to alternative sexuality practitioners with schizophrenia and other forms of psychosis, as an acquaintance, group leader, or partner. (I’ve pledged half of proceeds for that class to the National Alliance on Mental Illness; most of my classes were free in 2021, but are now mostly ticketed). 

I also launched Las Vegas TNG (The Next Generation) in May. We had twenty-one events throughout the rest of the year, and our first (outdoor) event in 2022 got about thirty people. This is a social group for local eighteen to thirty five year olds to explore alternative sexuality topics and more in a safe and supportive environment. There are many TNG chapters around the world. We’re having lots of fun and making new friends.  

I began taking the online, 400-hour Private Residence Butler Course through the International Institute of Modern Butlers (January). It’s a self paced, one on one correspondence course that has taught me so much that I channel into my homemaking and teaching. I’m currently on Module 8 of 22, but picking up the pace and working on it every day. I’ve picked up a lot of new related skills and been working on my health and therefore consistency.

2021 was a wild year, and I can’t even cover everything here. I’m thankful I got to spend so much of it with my amazing wife, awesome mom, and adorable cats. A lot’s been going on and is coming up in 2022, as well. Can’t wait to see what’s in store. 

If you liked this post, you might enjoy my blogfiction, or newsletter, and consider supporting me on Buy Me a Coffee or leaving constructive feedback. Thank you!

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 print out of my latest NaNoWriMo novel, and Xanax. We’re all on Xanax. Dingo, 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.  “Jesus FUCK!” she exclaims loudly, snapping 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 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 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 favorite professors over lunch, discussing this book and that. I liked creating pretty study guides, and even studying them. 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, septum 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. 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. 

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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.” 

Farrah, for the uninitiated, is one of my few distinct recurring hallucinations, a golden retriever puppy.  I have long wondered why she 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 don’t often truly visit Farrah’s Void anymore—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 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.  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. 

Let’s look at some big previous mentions of Farrah from this blog.  Like this one: 

[Farrah] 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 swingset 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.

And this one, from early on in Farrah’s “lifetime”: 

[Farrah had] 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 her, 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. 

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.  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, 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 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 a while now, and am trying to recognize that for me, it’s ultimately an effect of psychosis, and treat it as such.

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’s just as much an assumption as saying a schizophrenic, and it tries to decide for me what my identity should be. 

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

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

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

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

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

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

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

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

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

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

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

Would I Cure Myself?

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

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

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

In any case, the year of questionable sleep.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just Another Day, Maybe

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

Part of me wants to say it’s just being on my period, and I can’t tell if that’s strangely logical or minimizing my own feelings. It could be that my best friend, more like family, left for a job in another state today. It could just be a long day. 

I feel like I was unfocused a lot of this morning, though I also got some important things done, scheduling classes I’ll be teaching in the new year, and even almost winning a game of ping pong with my wife (getting close is an accomplishment for me and most people). 

But by late afternoon, I was wallowing in angsty daydreams.  Making dinner went like this: put water on to boil. Set timer. Sit on couch, dissociate into my characters’ distress. Timer goes off.  Stumble over and add pasta. Set timer. Sit on couch, return to daydream. Stare, sniffle a little. Timer goes off. Stir pasta, mind still half somewhere else. Set timer. Sit on couch— 

By the time I got dinner on the table, I was on the edge of tears. Over… nothing in particular, or maybe things that happened to my characters that were not even quite canonical in their universes, dramatized montages, and certainly fictional in ours. My wife prodded at it—asking about both of the potential reasons for a long day I started with—but I shrugged it off, wasn’t up for much conversation, and mostly wanted to be left alone to fully return to my other worlds. I asked about her day instead. 

Finishing up dinner, unable to control the tears, I sat on the floor in the bathroom with the door closed and let them fall. It’s hard to explain the kind of tears you don’t really want to be soothed out of, especially when you’re not sure they’re over anything in particular, whether real or fictional. It’s like reading a sad book, or watching a sad movie, that is sad, yes, but good, so you don’t want to be interrupted. But not like, the tragic ending, or an especially climactic character death. More like one of those sad establishing character montages, like the exposition behind Do You Want To Build a Snowman, or the notorious, silent first minutes of Up. 

But in any case, I wasn’t ready to be done wallowing, so I hid for a few minutes until they came back under control, and my wife had gone upstairs. 

Then I went and did the dishes and cleaned up the kitchen, some other evening tasks, before retreating to my office, door shut, which isn’t super frequent and is usually for focus (really, to keep the cats out and not on top of my notebook or keyboard). And wallowed on the floor again. 

To complete the wallowing, I heard the vaguely sad piano music. This wasn’t so surprising, for a second, as in place of my usual rain sounds or Harry Potter themed ASMR, I’ve been using a calm piano Spotify playlist as my office background noise the last few days. Except I was ninety-nine percent sure that my phone wasn’t playing anything—I had just brought it up from downstairs with me, where I’d shut the music while using the phone as a timer.  But there was the piano, clear, but soft, barely rising above the hum of the air conditioner. Not any tune I recognized, nor anything coherent. It would pause, then pick up with a different key or melody or volume, or I would just hear a random isolated note here or there for a minute. Finally, I threw myself up off the floor and checked the phone. Nothing. Not coming from the phone. Just me. 

This struck me as interesting. Previously, I wrote about going down on my medication and hallucinating the Evanescence song I’d had on repeat. I was—back on my regular med regimen—again hallucinating music, but it was a hodgepodge of the (sixteen hour) instrumental playlist I’d had on shuffle. I’d wondered before if I’d done something wrong with the Evanescence besides the med changes. If perhaps something in it emotionally was a trigger (some of the chorus lyrics included can you hear me, can you hear me which was almost begging to be hallucinated), or if I just really needed to lay off the repeat button. But here I was again. 

Back on the floor, pondering that, finally distracted properly from the daydreams, I also noticed something else. I don’t remember where it began now—just a few hours later—but I had the thought, I’m still at the Marriott, and it was becoming more and more gripping. 

So, as context, in May, I used some of the extra Marriott rewards points my wife and I had sitting around from pre pandemic business travel, and had my own writer’s retreat/staycation at a nearby hotel. It was supposed to be three nights. I—and my wife—had anticipated that things might get a little weird. That I would stay up a bit late, snack on a few too many cookies, and get super absorbed in my fictional worlds, using the retreat to block out distracting reality for a few days. But things got a lot weird.  

I think because I underestimated the physical neglect. On my last full day, I realized I hadn’t brought any water, and had only had a mouthful of tap water to take my meds, and milk, since I arrived. I remedied this with a bottle of water and a Gatorade from the sundry store, but I mostly forgot about them after a few sips of each. I had neglected real food almost entirely, despite the fact I teach a class about cooking on the road. When I did the pre pandemic business travel with my wife, I made us nice crock pot meals and simple side dishes in a hotel room with nothing more than an old microwave and leaking mini fridge. At home, I eat at least two scheduled meals a day. Yet, alone and lost in writing, I had stuck mostly to toast, fruit, cereal, and dessert. I also acquired a microwaveable mac and cheese cup as something closer to real food, but I later found it mysteriously still sitting in the microwave, filled with water to the right line, but uncooked and abandoned. 

I had stayed up almost all night the first night, despite my usual at home bedtime of 9:30, then dragged myself downstairs early to check out the continental breakfast.  My sleep was weird the next night, too.  By that last full day, I uncharacteristically impulsively took an extra caffeine pill (another 100mg) midday as someone sensitive to caffeine. I had, realizing how late I’d stayed up and that I didn’t want to be in a coma all day, not taken the full dose of my antipsychotic med at least one night, either. 

I became a total wreck, and failing to find anything better available, had started self harming with manicure scissors, for the first time in almost four years. I calmed down enough to throw on some antibiotic ointment and call my wife and tell her all this. She was calm, appropriately concerned but understanding, and asked if I wanted to come home. I wasn’t sure. I tried to write some more. But by midnight, I realized the words had stopped coming that morning. After another phone call, she picked me up and took me home. 

Anyway, you can see how this makes sense as a source of a delusion. There’s a lot of stuff already wrapped up in there. Lying on my office floor tonight, I felt myself sinking into the idea that I had never left that Marriott.  That everything after was a hallucination, a dream, a… I wasn’t sure what. 

But we went to Tahoe, I thought, over and over, trying to counter the issue with more travel. In July, we took a trip with a friend and my Mom (a delayed Mother’s Day present for the busy schoolteacher) up to Lake Tahoe, got a beautiful Airbnb with gorgeous views and regular meals and sleep and meds. (Yet, it’s a picture of the Strip I took from my twenty-third floor Marriott room that lives on as my desktop background; I spent almost the whole time in front of that window, watching over the top of my notebook the flashing lights, the monorail passing by, the High Roller going around. The crazy city I’ve always called home.) It was like the never left the Marriott theory had come in a flash of enlightenment, but I was still thinking my way through it.  But… Tahoe. And everything else. 

I also had a slight grip, in a way, on the fact that the never left the Marriott thing was the actual delusion, and I was trying to avoid sinking into it, but also desperately mentally countering it, as if it needed to be countered and not ignored. I felt a phantom burning in my wrists that is usually a you want to cut kind of physical manifestation, but I thought, Or I’m dreaming. And they would hurt in real life because of what I had done with the manicure scissors that afternoon. 

And then, strangely, lying on my office floor, it all kind of went away. The daydreams were a vague temptation, but had no strong, magnetic grip on me. The piano notes grew further and further apart, then quieted, and there was just the neighbors talking in their yard on the other side of the wall. The Marriott theory was like something I’d read in a book once—interesting, but not demanding. The phantom burning subsided as I eyed the long healed faint marks. 

I took a swingset break, made us some Rice Krispie treats, cleaned the kitchen again, checked the Internet, started writing this—the most I’ve written all day—and got ready for bed. 

Well, let this weird day be over, then, and we’ll see what tomorrow looks like.