On Hindsight and Blinders, for the Queer and Mentally Ill

Quarantine has made a lot of people get back in touch with each other, and in the year before quarantine, I delightfully seemed to keep ending up with sudden messages from old, out of touch friends.

This always begs the question—what do you say?

Sometimes I start where we left off and bring them up to speed; sometimes I focus on whatever it was that brought us together to begin with; sometimes I give a summary of my life now and backtrack where it would be confusing.

Often, mental health comes up.

Relatedly, a pretty frequent experience for people in the queer community is that before any of you realized your gender, sexuality, so on, your group of friends bonded together over something else and all, later, turned out to be queer.

Mental health I think frequently goes the same way.

Two out of the three people I was closest to in high school turned out to be bipolar (and heteroflexible). The general group I went to for writers turned out to contain more mentally ill queer people than not. My closest Internet friends were often eventually one or both. (Once, when I mentioned I was living with my girlfriend to an old Internet friend who got back in touch, I had a moment of hesitation; she responded that she was marrying a woman that weekend.)

This is true time and time again.

This begs another question—if something can draw you to certain people before you know what it is—is it unlikely to be a surprise when someone you used to know turns out to be mentally ill later in life? Is there a way of just knowing that something is off before diagnostic checkboxes get checked and labels get slapped on? If I mention my mental health as of late to someone getting back in touch, should they be that surprised?

Some of my diagnoses were belated. My autism symptoms were nigh life long, arguably my anxiety too. My schizophrenia manifested for the first time years before it was diagnosed, also at seventeen, and as I poke more at how the average person connects to reality and daydreams and mental processes, there were always at least internal signs of… a predisposition? Something not quite right? More than maybe an overactive imagination or the proclivities of a writer?

Hindsight’s 20/20 and normalcy of any kind can be a hell of a blinder.

Once, in middle school, I found myself breathless with worry, and wondered—for a very short moment—if I was having a panic attack, which at the time was this abstract concept some of my Internet friends talked about. I immediately brushed it off, thinking, “I can’t be having a panic attack; I don’t have an anxiety disorder because I’m not mentally ill.”

That simple moment of thinking of mentally ill as a huge phrase—so easily brushing off this identity that simply could not be mine—convinced me I was fine. Maybe I was having a panic attack; maybe I wasn’t. I did not have what I think of as my first proper one for another year. I accepted what that was fairly quickly once they were handing me papers at the ER that reassured me I wasn’t having a heart attack at thirteen.

The idea that I could be something that wasn’t heterosexual had not even crossed my mind as a question until I was fifteen, despite obsessions with female fictional characters of a very specific sort, uncommon feelings for some female friends (mostly ones who later turned out to be queer themselves), romantically coded daydreams that seemed to come back to the female characters quite frequently.

Yet, all it really took was feelings for one girl that skyrocketed beyond what an internal heteronormativity blinder could hide, that took a veil off of years of emotion and threw it aside for the future.

I don’t remember first developing my suspicion I was autistic, but I was self diagnosed before I saw a psychologist. I was probably researching mental health issues for my more known ones, and came across a diagnostic list that sounded very relatable and brought a lot of ohhhhh at the hindsight. I think I continue to frequently find more moments of ohhhhh still—oddly, because I seem to have finally fallen into a crowd more neurotypical than I am—and when they don’t relate to a thing I do—I go ohhhhh. So that’s a me thing.

When I first started having psychotic symptoms, they were episodic and tied mostly to severe panic attacks. Schizophrenia as a label I also don’t remember first accepting, realizing, but I assume it came as I had or realized more symptoms that came outside of the purely episodic; I also was self diagnosed with this before I saw a psychologist. This, too, I still frequently have revelations about. It was just recently I found out how the average person’s daydreams work, and that they sound a lot less like psychosis than mine, once described. But, who thinks to describe some of these things, until you have a reason to ask? The more I know, the more reasons I have, the more questions I ask.

I think that’s the only real way to lift the veil, to realize things before it is even further in hindsight.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On Farrah and Treatment

Previously

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On the Protection of a Facade

I recently read The Collected Schizophrenias by Esmé Weijun Wang (and I saw so much of myself in it, I’ll probably write a whole other post about how amazing it was). One theme that jumped out at me can be summed up in this quote:

“To some extent, the brilliant facade of a good face and a good outfit protects me. My sickness is rarely obvious.”

There are ups and downs to appearing normal (whatever that may mean). One downside is that it’s easy to convince even yourself that nothing is wrong, if you look in the mirror and all looks well. It’s easy to think you are exaggerating or lying even to yourself, especially when you have a real disorder that skews reality just like that.

A thing about schizophrenia is that it sets you in the frame of mind of questioning things. Reality gets tricky easily. Maybe one hallucination is obvious, but you know there are others that aren’t. When something is real, and you do think it’s real, but in any way off, you still give it a close examination in skepticism. One thing out of place sets off a spiral of—well, if that’s maybe not real, what else am I missing? Knowing you see things that aren’t there means you question the things that really are. I’ve speculated that the reason I have so many lucid dreams compared to many people I know is because the key to lucid dreaming, according to most how tos, is reality checking. Looking for something out of place enough you realize you’re in a dream, and that you can control dreams. You have to set that habit in the waking hours for it to occur to you in a dream, though. And I’m used to doing that in my life so much that it slips into my dreams.

The same goes for mental constructs. You know that you get on the wrong thought trains, and if you’re thinking about having schizophrenia itself, you question that thought train, too, especially when the evidence you’re more sure of looks so… normal.

On the upside, it means that unless I’m truly in the middle of an episode, when I want to play it down, I can, and when I want to not talk about it, I don’t have to.

This does mean a bit of an obsession with maintaining those appearances, in various forms. Physical presentation standards—and the ability to keep that up even when there are hard days. Even online presences or the way I move or talk. When I fear I am slipping mentally, I develop another cycle of obsession with making sure my clothes have no holes, stains, mismatches, poorly chosen sizes, or anything that stands out too much.

Recently before a video chat with my therapist, I asked Kate, who has much steadier hands than me, to trim my bangs so I could actually see my therapist and not the backside of my own hair, and an observing friend said something like, “So, ‘I had a psychotic break, but not so much I couldn’t get my bangs trimmed.’”

And on the one hand, I wanted to be able to see, and on the other hand… well, yes.

In some ways, I talk about my mental illnesses very openly. There are few cases where I won’t mention the diagnosis itself. There are a lot more cases where I play down how troubling it is, or laugh it off. Most of my friends know I hallucinate, but they hear about the flashes of light and the white noise and the echoes and the objects that get flipped in my vision, and less about the corpses and voices. More still hearing things while wearing noise cancelling headphones, and less sleeping on the couch because beds are a trigger.

It’s been a hell of a year (tomorrow) since the PTSD began and brought a fresh wave of psychosis with it. It had been fairly easy for quite a while, before, to live with and ignore the odd white noise or flash of light, and easy to sink into the comfort of maladaptive style daydreaming. After, there were the night terrors that practically looked like seizures, the waking hours’ blurred line between flashback and hallucination that eventually leant far towards the latter.

Those are the pieces I try to keep to discussing only within the right context for it, and those are the pieces I can tuck away when I’m wearing clean, matching, well-fitting clothes that don’t draw the eye, and my hair clean and trimmed and brushed.

If I didn’t keep up those appearances—the question of the full extent of illness would come up a lot more, whether I wanted it to or not—something tough especially with trauma.

So I understand the idea of the facade protecting you. It’s a little wall between you and the possibility of never being able to set illness aside for a moment of normalcy.

On My Schizophrenia Tamagotchi

“Farrah’s back,” I said at brunch. “She seems to like mornings.”

It was a morning just days ago when Farrah appeared for the first time. A puppy hiding between the edge of a desk and the wall. She never got too close, but when I paid particular attention to her, I could, unbidden, feel her warm fur in my fingers. The tactile hallucinations were relatively new, too. I wasn’t complaining about this one in particular, though; it was much less terrifying and consuming than the others as recent as last night, almost soothing except for the nature of hallucinating and knowing it.

The name Farrah was printed on the silver dog-bone shaped tag on her red leather collar, the kind of bright red that made more sense for the image of the ribbon you put on the puppy on Christmas morning than the stiff material the hue appeared on. The color appeared almost scribbled over the texture rather than a part of it. I could read the name only when it came as a zoomed-in flash of an image, and I think I felt it more than read it. I didn’t know why Farrah. Google later revealed an Arabic origin, a girl’s name meaning joy.

Rather benign for a manifestation of mental illness.

After first noting Farrah’s appearance, I noted that sometimes when I changed rooms—she was highly reactive to the real environment, a trend for my hallucinations lately, pawing at the unknowing actual cats curiously, hiding in real nooks—she vanished from that environment, but came to me in flashes of moments when I started to dissociate. Trying to describe where she was in those flashes, I told Kate that it was like a computer game I’d played as a kid—there was a dog in an unexciting space without much to do but pet its head and throw a ball and give it a treat and have it look cute and do tricks. Having not played the game I had in mind, Kate, more of a nineties kid than me, came up with something similar enough:

“Oh, like a tamagotchi.”

This set me off in a long giggling fit I couldn’t stop. “Oh my god, I have a schizophrenia tamagotchi.”

In keeping with that nineties kid theme (though a friend did recall the game I’d mentioned, on a different platform), I later described Farrrah with a comparison to the golden retriever puppies in Lisa Frank products. She wasn’t very cartoony, if a little poorly rendered, but it gave a quick image translated to a more realistic looking hallucination, the chubby, fluffy golden retriever puppy with a sleepy expression.

Unlike the tamagotchi, I couldn’t really decide what Farrah did when she was in that space. She didn’t do much. Sometimes I got a flash of her rolling around or chewing on a blurry toy, fading into that space as the real room faded away. When she came into my actual environment, at the most random of moments, she responded to what I did, but not how I willed it. She cowered behind a shelf when Kate spoke loudly and growled at the cats playfully; she might sniff the air and take a step forward curiously if I beckoned, in my mind or in reality, but she still didn’t get close enough to see if the tactile hallucinations would line up.

Like some recent others, I could feel her, but she simultaneously appeared several feet away. Still getting used to the tactile hallucinations, it was interesting to note the disconnect. The very occasional auditory hallucination of a yip or growl did seem in line though.

I knew she wasn’t real—no running cats or confused people, too many things not quite right—but the responsiveness was interesting. Imperfect and inconsistent, but there, like a dream.

Mostly Farrah was cute, shy, and playful. The only disconcerting thing about the photo calendar ready puppy was that she wasn’t quite right, wasn’t quite real.