My Experience with Schizophrenia (Coda)

Trigger warnings for description of psychotic episodes and a suicide attempt, in detail, and violent imagery.

I have Schizophrenia.  I find certain words can lose their sting when we just come out and say them.   So I’m saying it. I live with Schizophrenia.  This is my story.

I remember when I was a teenager how emotionally unstable I was.  There were people that I cared about a lot who resented me for all my emotions – some thought I was just doing the ‘angsty teenager’ thing for attention, one even told me to ‘grow up.’  I blamed myself a lot for losing those friendships, but I’ve finally gotten the closure I needed for myself, and I know I wasn’t just an attention starved kid.

I have schizophrenia, the onset of which was likely around age 13 or 14 for me.  At the time, I didn’t know how to express the things I was experiencing – I felt like everyone was watching me, judging me.  I felt like people could read my thoughts.  I thought the surveillance cameras around school were to observe me and only me.  It was disconcerting, but to say these things out loud would make me seem crazy, so I tried to keep it inside.  Thus, the angst.  It felt like no one understood me, likely because no one understood what I was going through. (Which is something I regret now.) I started doing poorly in school and withdrawing from the friends I did have.  I lost interest in many things, and had very low concentration.  In retrospect, this was likely the first prodromal phase.

During my early teen years, I tried to find release through cutting myself.  I knew it wasn’t right, and frankly, it did very little for me, but my head felt so out of control, I didn’t know how else to handle things.  I had just lost my best friend/lover to suicide, and things were falling apart at home.  I guess I’m pretty lucky – It didn’t take me long to kick the habit.  I know it can be a crippling addiction.  I stopped after one experience of an incision speaking to me.  It told me that I was worthless and might as well cut all the way.  This marked the beginning of my first active phase.

Not long after that, I began hearing a commanding voice that I was sure was God.  I was heavily preoccupied with my church at the time, to the point that it was taking over my life.  This voice – ‘God’s’ voice – told me to do a number of things, many of which I listened to. Like when I ran away from home.  I was scoffed at by my family when I tried to explain that God told me to do it, which made me feel very alone.  The church offered me the validation I needed, they didn’t make fun of me for hearing God, so I remained very close to the Church for a couple more years, even after that active phase had subsided.

Some background information: As previously mentioned, I had lost a lover to suicide.  She was the closest thing I’d ever found to a soul mate, and even though she was female, I never thought of our relationship as being ‘wrong.’  It was just us, two people, our genders didn’t matter.   When I started regularly attending church, I was taught that homosexuality was ‘wrong’ and ‘dirty’ and ‘disgusting.’  I thought that God took my love away from me and sent her to hell to teach me a lesson. I suppressed my feelings toward women so deeply that even I couldn’t see them anymore.  But, like all things, they popped up again, and I found myself, after the active phase had passed, questioning my position in the church, and questioning certain parts of the church’s teachings, especially around homosexuality.

When word got out that I was attracted to women, the validation I got from the church collapsed beneath me, a mere couple months after my parents had moved to the other side of the country.  Fortunately, at the time, my mind was fairly stable – the active phase had waned into a residual phase.  ‘God’ hadn’t spoken to me for a few months, and while I was still heavily preoccupied with religion, that preoccupation easily transferred from Christianity to Wicca after the church shunned me.  Wicca gave me a sense of power, and was something I could practise by myself.  I had withdrawn a lot during this residual phase – I still had friends but I seldom made effort to see them.  I had no interest in social connections; I spent break times at school in the music room playing the piano.

As the residual phase tapered out, I regained some of my sociability and some of my right mind, but I had already gotten irreparably behind in schoolwork.  Everyone thought it was because I was lazy.  I didn’t know at the time that what I had gone through was, indeed, schizophrenia.  I just thought I was some kind of freak, and I was scared that if I told anyone, they would think I was a freak, too, so I didn’t know how to counter the accusations of laziness.  Then, I was kicked out of my house before I had the opportunity to to finish high school.  I found work and a place to live, until about a year later, when I was hit by another prodromal phase.  This time, I sought help.

I had been at work in a job I loved in August 2009, when the voices began.  I heard a voice, the voice of my deceased lover, telling me to kill myself.  Not knowing how to respond, and not feeling a lot of presence in my body, I clocked out after my shift.  From work, I went to the pharmacy to pick up a prescription, then to the liquor store to buy a mickey.  After writing my suicide note and letters to various people, I proceeded to a small spot in the forest along the river, where I took the pills with liquor to numb my brain and my body, and cut my wrists.  I passed out before the knife got to my throat.  The overdose caused some intense hallucinations after I woke.  Everything in my vision was shifting, things were buzzing around my head and I couldn’t swat them away.  I was freezing cold and completely alone.  I remember seeing a man in a blue plaid shirt.  I shouted to him to help me, but he kept disappearing and reappearing further away, so I kept chasing him.  Then I was at the hospital in a different town.  I don’t know how I got there or how long I’d been there.  I couldn’t stop shaking, and I felt sick to my stomach, but I was alive.  Unfortunately, the increased hallucinations made me wish I wasn’t alive.

The psychiatrist I saw in that hospital was a downright ass-hat.  He completely ignored my psychotic symptoms.  He diagnosed me with Borderline Personality Disorder and Oppositional Defiance Disorder, and blamed me for all my suffering.   When he asked me why I wanted to die, I couldn’t explain.  With him, I couldn’t find my words.  When I divulged to him that I felt abandoned by my parents, he said, and I quote, “Everyone else is going to leave you, too, if you keep acting like this!”  When I left the hospital a week later, I felt ready to jump in front of a train.  If I’d felt more stable, I would have sued him for malpractice.

At any rate, I was discharged from the hospital, and referred to a mental health intake worker.  When I described my feelings to her, she referred me to Early Psychosis Intervention, where I worked with a wonderful psychologist and his intern for a while.  They diagnosed me with traits of Borderline Personality Disorder and Psychosis NOS.  During that time, I was approved for a disability designation income, and moved from the suburbs into the city to establish a new life.  Unfortunately, around the time of moving, I was hit with a series of issues including major memory lapses.  There are whole days I still can’t remember.  I would find myself in the park, or in a pile at the bottom of the stairs, and not know how I got there.  It was terrifying.

I had a few major psychotic episodes that required me to be in hospital.  One involved a man who I was sure was stalking me.  At one point, he broke into my apartment, and I slit his throat.  The police came, and while I assured them I was fine, they brought me to the hospital.  They told me he wasn’t real.  It was very difficult for me to understand.  I’ve since moved apartments, but right up until the day I moved out, I still saw his blood on the carpets, and to this day, I still jump when I hear a siren.

The issue with the hospitals was that my psychosis wasn’t ‘normal’ enough for them to properly diagnose me.  It was like I was too smart, or too observant to have ‘real’ psychosis.  I explained this to a friend and advocate of mine, and she wrote a compelling letter to the psychiatrist I was seeing in the hospital.  Her letter convinced the psychiatrist to take a second look at my case.  I was referred to a mental health team, and I received my schizophrenia diagnosis in the autumn of 2010.   Since then, it’s been a rollercoaster, but at least I know the monster I’m dealing with.   I’ve been stable for several months now, and I’m filling my life with positive things.

It sounds like a happy ending, but it’s just a start.  I still have ups and downs.  Schizophrenia is something I will be dealing with likely for the rest of my life, but I can make the most of it.  Some days I struggle a lot, some days are just days, and I have some really good days too.

I said once, somewhere in the middle of my teen years:

“The day is only what you make of it. If you can just laugh it off and call it a day, then that’s all it has to be.”

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