Posted in Emotions, Peer Support

My Experience With Schizoaffective

I did not talk in school. Violence, arguing, and substance use permeated my home. I wet myself multiple times because my anxiety wouldn’t let me raise my hand to ask to go to the bathroom. I fainted in fourth grade when asked to solve a math problem on the board. My demeanor was spotted, as far as my knowledge goes, in Kindergarten. It would have been in the years 2000-2001. My parents were informed I’d “grow out of it”. I didn’t.

I started self-harming (cutting, burning, hitting) when I was 11, just a few months before we wound up homeless. The last time was two years ago, about age 22.

Marijuana made things tolerable in high school. If I smoked all day, I wasn’t anxious or depressed. I smoked from 7am until I went to sleep. I’d leave school to smoke, cut class to smoke, and if I didn’t have it, I was thinking about it.

My internal world was very rich, and I hypothesis my severe withdrawal is why many of my voices are internal.

Cars were the first thing to talk to me. They told me jokes and had very different personalities. I’d sit on the floor of our studio, right in front of the door and just laugh and laugh. I learned I didn’t have to talk out loud to them, they could hear me when I thought my answers too.

But, I was a kid. Many kids are imaginative and I was particularly so.

The first time I heard an external voice that startled me was sometime in my freshman year of college. I’d been through psychiatrists and therapists already for depression, anxiety, and PTSD. This voice wasn’t much of a voice. She just screamed. She’d scream at night in particular.

I didn’t sleep a lot, and in high school this was because of anxiety. In college, I just didn’t need to sleep. I spent some time conducting fake studies and believing I’d cured all illness with a simple frequency level. I took physics, calculus, and chemistry to learn more and lost sight of my actual major. I knew I had a path, and with each new direction I took, a new feeling would tell me THAT, that right THERE, THAT’S my path. I’m being guided.

I dipped in some more depressions, on and off. Severe ones. They landed me in crisis units. I didn’t bathe, I quit jobs, I wouldn’t clean my room and by the end of an episode, my ankles would be buried on my floor in junk–clothes, paper, scribbles, drawings, poems, trash, trash, and more trash.

I’d hear voices, the screaming woman still, and a male. He told me I was a dead man walking. He’d call my name and laugh when I turned to look for him. I also had voices interrupting my thoughts. I didn’t know they were voices then, and they’d tell me I wasn’t crazy.

Things took a darker turn quickly. People started being possessed–my classmates, my new coworkers. This was around the time I started working at the Peer Respite. Possessed by demons, the voices, and it was their talking I fell asleep to at night.

They didn’t just communicate with me externally or internally. They left signs around the world for me: messages with news casters, trash, online ads, television shows and commercials. Then they showed me hell.

I don’t believe in hell, but I didn’t have another word for what they showed me, so I called it that. They showed me torture boards where they stood beside my latched body, laughing, turning gears so my limbs could be pulled from my body. They took the form of clowns in my room at night and my childhood fear of sleeping in the dark returned.

I believed they manipulated my dreams as well. They were there with me sometimes, I could hear them, and they sent the Day Walker after me. This became a reoccurring dream for me: a man who killed in broad daylight. He chopped off his victims heads and stuck them on stakes, which he then scattered around town as signs to me. The last dream I ever had of the Day Walker (named so by my voices), he’d found me hiding underneath a car. I smelled the mud on his boots. I never saw his face.

I awoke drenched in sweat and tears. I was used to my dreams being permeated in blood, rape, murder, mutilation, dismemberment, and terror. But something about this one was different. The voices said he was coming for me, and so were they. I then determined they were demons.

When the Las Vegas shooting happened, and the investigators couldn’t find a motive, I knew my demons were right: they’d possessed that man and killed those people as a message to me. The message was: we’re going to thwart your reason for existence, because your reason for existence is light and our reason is dark.

I don’t remember a lot about this time. I’d entered a silent war, a war whose outcome would determine my fate and the fate of the earth, given my future importance. I was constantly told I’d be killed. This scared me. I was anxious all the time, withdrawn, confused mostly, losing track of time, school, and work.

At home I stayed in my room. I’ve always been withdrawn from my parents, and this time was no different for them. It was when the sheriffs showed up to their door, though.

Eventually I threatened I kill myself because the demons wouldn’t stop. This prompted a 911 call, unknown to my parents, and I was taken away in the back of the sheriffs car in handcuffs to the hospital I hated being in.

I called home incessantly, demanding to know what they were telling my parents–which was nothing. I paced and paced and was sent an hour from home to a new hospital. A better one, in my opinion.

I got sleep there, something I hadn’t had in so long. And when I came out, sedated and still very confused, loopy, I followed butterflies who told me I should follow them. I spent hours walking without knowing I was walking. I took up a habit of wood burning and carving.

What I find most interesting about my journey is how it is to put into words all the things I experienced, so many of which I only have snippets of clear memories of. I have vivid feeling-memories of pain and voices and confusion, mostly. I tried to kill myself again, this time actively, but was saved. That was the loudest my voices ever became, and that was the result of stopping (all) my medication too quickly–a SSRI, an antipsychotic, and some anxiety med.

I have another voice, usually external but sometimes internal, who will ask me how I am. He’ll check up on me when I’m having a particularly hard day. That was the beginning of me seeing the benevolent side of these so-called demons, who I now refer to as false angels. He emerged when I started learning how to get in touch with my feelings.

So, I didn’t do anything drastic. I never ran down the street or screamed at people or openly talked to myself or to others so incoherently. So much of my experience in early life was internal, as protection, that my mental health expressed itself internally as well. It was rare my anxiety showed, or my depression. I have people to this day tell me I don’t “look” anxious, or behave anxiously–there are some people who I can see it in; they walk into class shaking or tapping as a soothing technique. They ask clarifying questions constantly or confirm their answer constantly, fearful of being wrong.

I didn’t know how to put my childhood into words, particularly not as a child.

One of the misconceptions about psychosis is that we’re all the same level of “obvious”. But that’s what we see in the news, or read about in people’s stories. It’s how we get killed by police using improper force out of fear. But not all of us go kicking and screaming into the hospital. My terror petrifies me, and so being fearful only paralyzed me. I didn’t talk to anyone, I didn’t fight the nurses, I sat in my corner of the hospital and listened to my brain rampage.

I wanted to share this so everyone knows where I’m coming from when I write these posts. It’s a place of understanding and also a place of not understanding; I’ve never been thrown on a cot and injected. I’ve never walked down the street with no shoes, homeless, talking to my voices and being arrested for trespassing. I’m still very disconnected from the very people I share so much in common with.

I think it’s worth celebrating the differences in our experiences, not just the similarities. Psychosis is notorious for taking over. It’s notorious for being unpredictable and obvious. It’s got some subtle undertones in some of us though, and sometimes it feels wrong to express this, given the hospital trauma–like cot injections– so many of us experience.

Thank you for taking the time to read this.

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Author:

Writer. Reader. Science advocate. Living well beyond the label Schizoaffective.

3 thoughts on “My Experience With Schizoaffective

  1. The bit about us not all being obvious is a really good point. I’m very shy and reserved by nature and when I was extremely paranoid, no one knew, I just sat in the corner in absolute terror, convinced staff were talking about killing me. I saw someone recently say about how the loud patients are the manic ones (usually true but I’ve also seen a completely manic guy just lock himself in his room and quietly write for hours) and the psychotic ones (not always true), so this really resonates with me.

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    1. Yep exactly. Everyone deals with their stuff in different ways. I’ve seen a man run on all fours through the hospital, bark and howl like a dog, then bang his head on a linen closet door until a nurse shouted at him. Which didn’t help anything by the way. I mean who KNOWS what was going through his head. And because it’s that kind of strange behavior that gets sensationalized in the media, it gives a scary, unpredictable, and “exotic” connotation to psychosis.

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