hpr-knowledge-base/hpr_transcripts/hpr1328.txt

Episode: 1328
Title: HPR1328: A Hacker's Perspective On Schizophrenia 
Source: https://hub.hackerpublicradio.org/ccdn.php?filename=/eps/hpr1328/hpr1328.mp3
Transcribed: 2025-10-17 23:37:40

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Take good care of yourself.
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Hello everyone.
Hello everyone.
Hello everyone.
Hello everyone.
My name is SIGPLEPSONASL plantationvästין.
My name is SIGPLePSONASLhailул, and I am taking over the HPR
way it was.
The time is 7 o'clock somewhere.
I'm going to be talking about schizophrenia, specifically my experience of it, and first
before I talk about anything, I probably should answer the question, why?
Why schizophrenia on a show about hackers and hacking things?
Well, I'm a hacker, so it's from a hacker perspective, I suppose.
That's the reason why.
I think my perspective is, well, I want to understand my brain and understand what's
going on, and share with you the experience of me trying to understand that, and in any
hacking endeavor you seek to understand something, I think, and so that's the reason why.
I want to start by talking about my history.
I've been in the hospital nine times, I think, I lose track, I lost track a while ago.
I think it's been nine times, and I want to talk about my diagnostic history.
At first I was diagnosed with major depression with psychotic features, then schizoaffective
depressive type, and now finally I'm diagnosed with schizophrenia, paranoid schizophrenia, specifically.
They seem to think that my depressive symptoms are a result of my schizophrenia.
There are a few people in the public eye that are schizophrenic, that are high functioning,
Ellen Sachs, for instance, or Frederick Fries.
Let me play an excerpt from something by Ellen Sachs.
She's a hero of mine, and I just want you to hear before I continue.
My doctors diagnosed me with chronic schizophrenia and gave me a prognosis of, quote, grave.
That is, at best I was expected to live in a board and care and work at menial jobs.
Fortunately, I did not actually enact that grave prognosis, instead I'm a chair professor
of law, psychology, and psychiatry at the USC Guild School of Law.
I have many close friends, and I have a beloved husband, Will, who's here with us today.
I too was given a prognosis and went to that.
I believe the third time is in the hospital.
They wanted me to live in a group home for the mentally ill, which I refused.
Fortunately, I wasn't committed at that time.
And I think it's important to realize that people can be high functioning and have schizophrenia
at the same time.
I consider myself a high functioning schizophrenic, although I don't have a job, and I live off
disability, and I go to drop-in centers and whatnot.
But I have friends, I have lots of friends, and I have a social life, a healthy social life,
which is something that people with schizophrenia believe not to be able to have.
So I consider myself high functioning, although I may not look high functioning on paper,
I consider myself high functioning.
One thing I could ask a lot is how it started, what was my first psychotic episode.
I think people have a lot of interest in this.
In movies, you see people portrayed as schizophrenics just in their psychosis.
There's a lot more to schizophrenia than psychosis.
But I could ask this question, and I don't really know how to answer it, because I don't
remember.
There's a lot that I don't remember.
I think it's because my thought process is in a different place than it is when I'm
healthy, when I'm sick, when thought process is in a different place.
I remember specific things, like having the feeling that people were putting thoughts
into my head to make me go places so that they could capture me.
I remember that thinking that at an early age and being just incredibly afraid about that.
I stopped going outside.
I would not go outside for the life of me because I thought that any volition on my part
to go outside was caused by someone else's thoughts that were inside of me.
So I guess that's when it started.
I started going to the hospital when I became paranoid that the people who don't exist.
I thought people were living by my friend Jess in this abandoned house, but they weren't.
I thought that they were following me because cars are parked in the parking lot, and I thought
I'd see the cars and whatnot, and it's all a big, confusing thing.
The second time I was in the hospital, I brought myself in there because I thought that
people were reading my mind, which I had the insight in believing that that was odd.
I had that that bit of insight, fortunately, so I brought my own self into the hospital.
Hospitals are funny places.
They are, quite frankly, they're filled with people with a lot of stories and just interesting
ness.
When you're in the hospital for the first couple of times, for the first few times, you think
to yourself that you're never going to go to the hospital again, which turned out not
to be the case in my case.
I remember there was this one fella who had paranoid schizophrenia who I met who believed
that he was in a game show, and that we were all part of the audience or that we were participating
in the game show, which didn't strike me as a very strong delusion until I found out
later that the reason why he cut himself in his wrist, up and down in his wrist, a very
deep cut, mere inches, centimeters, whatever away from his artery.
He did it thinking that the producers would save him.
I have in the show notes a drawing that I drew of a man who's in the hospital who's afraid
of touching the ground.
I didn't experience this.
There wasn't anyone who wasn't afraid of touching the ground.
This is just what came out of my head when I decided to draw about the hospital.
With all this, let's talk about what schizophrenia is.
According to Wikipedia, I'm not going to cite the entire Wikipedia.
Partically here, just a little bit of it, schizophrenia is a mental disorder characterized by a breakdown
in thought processes and by a deficit in typical emotional response, which is more or less
true.
There are a couple things about schizophrenia.
There are positive symptoms and negative symptoms, positive symptoms being things that are,
I like to think things that are added, if that makes sense, like paranoia or hallucinations
or delusions or disorganized speech and things like that, that is attitude and experience.
They're negative symptoms as well, which are impairment of social cognition, for instance,
social isolation, difficulties working with long-term memory, difficulties with attention
and executive functioning, as well as the speed of processing is also slow sometimes.
Anodonia, which I believe is the lack of not being able to feel pleasure and evolution,
which is lack of motivation and these things.
Schizophrenia is a pretty big soup of symptoms.
The diagnostic criteria for diagnosing someone's schizophrenia is pretty simple.
It's two or more of these symptoms that I'm going to list that last for a period of six
months.
So delusions, hallucinations, disorganized speech, formal thought disorder, grossly disorganization,
disorganized behavior, negative symptoms, like bunting, affect, lack of indeclineant speech
and whatnot.
It's six months up to or more of these symptoms, also any social or occupational dysfunction
for six months.
Yeah.
The reason why I think the reason why I diagnosed with schizophrenia is because I had expressed
to my doctor at the time, Dr. B, let's just call her, that I was being followed in 2005,
which is still a little bit nebulous whether I actually was or was not.
Also, there was an experience on the train where someone was yelling at me, just screaming
at me and I did not look at this person and it's a bit nebulous whether that actually happened
or whatnot or not happened or not and a few other things as well as the symptoms that
I was experiencing in the hospital at the time I was diagnosed.
Schizophrenia for me has been, I think, more negative symptoms than positive symptoms.
I've had some positive symptoms, persicutory delusions, for instance, persicutory delusions
being the hallmark of paranoid schizophrenia in that end delusions of grandeur, which I
have not had delusions of grandeur for that, that is a part of a paranoid schizophrenia.
At least I don't believe I've had no delusions of grandeur.
I thought I'd killed someone for a long time, I thought that I'd killed somebody and that
could be a delusion of grandeur.
I'm not exactly sure that that was, but yeah, that was a hard time.
I just knew that I had done something and possibly with the gun and that I had forgotten
or something like that, that was, I still comes up every now and then, but it's a delusion
that's hard to deal with.
But mostly it's been negative symptoms for me though.
I've never been able to keep a job and I've always been a little socially, not really with
it socially and not pick up on a lot of things and so yeah, I think a lot of it is negative
symptoms.
When I was diagnosed, before I knew what schizophrenia was exactly, while after I learned what schizophrenia
was, and after I learned about the negative symptoms, I was in denial for a long time.
But I think they, I think it really matches my life and so the people who diagnosed me
saw that and you know, I'm learning to see it now too.
This, this past time is the hospital, I just got out of the hospital.
I was in it until July 1st and so I didn't get to experience, I think it's to experience
pride here.
Saw that from the inside and so what I like to do, I thought that there were people living
in my toe when I was in the hospital, which is a peculiar sensation and a thing to think.
I think I had tactile hallucinations where I would feel people in my toe moving around.
So what I like to do is after I get out of the hospital, I like to get my medical records
almost instantly and read through them.
And I found some patterns in them.
It's good to have these medical records because I forget exactly what my thoughts were and
what I experienced.
I forget them really easily.
So I have all these medical records and when you, when you first go in the hospital, they
you meet with a psychologist or someone who makes an initial diagnosis and writes a report
about you, an initial report about me, which is the first thing that I read and then you
followed every day by a doctor, a psychologist who makes notes about you and whatnot.
And one pattern is that there's always these in front of the notes, there's always a list
and I'm going to read you the list of one of my notes and it says appearance, bizarre attitude,
cooperative and less guarded, eye contact, fair, mood, anxious and depressed, affect,
intensities, flat and constricted mobility, speech, clear coherent, psychomotor of behavior,
physically retardation, which apparently physical retardation when it comes to the
psychomotor behavior, thought process, illogical associations, loosening associations present,
thought content, sessions present, insight, limited, judgment, limited and so on, like
orientation, attention span, concentration, recent remote memory, language, fund of knowledge,
muscle strength and tone, gain station and so this is the beginning of a lot of notes.
And so they make note of your appearance, which I thought was interesting and your attitude
and whatnot.
I mean I can understand making note of your thought process and stuff like this, but they
definitely make note of your appearance.
Here's another one, the list reads hallucinations, thinking, orientation, memory, insight, judgment,
eye contact, affect, mood, physical appearance, hygiene, suicidality, self injury, activity,
speech, medication sensitivity, which is a kind of a bizarre thing, psychomotor or gate
and hygiene, and hygiene isn't filled out in my particular note there, so that's kind
of fun.
The, there are texts in the hospital who apparently write down everything that happens, this
is what one wrote about me, patient is visibly in the maloo, pacing the hallway, without
practicing, making much in groups, patient has flat, blunted effect, patient feels that
she, hmm, well actually this is a little private, I don't think I want to read it.
But yeah, they take note of everything that goes on on you in the hospital, you can't
get away with anything.
The only thing I got away with was cheeking my vitamin D, that is keeping my vitamin D
in my cheek and not actually swallowing it, because I, it wasn't labeled and I was suspicious
of the things that, that they were giving me at the time, so I'd go and check the label
of each medication, I'd write down the label, and the first time I would cheek them, and
then after, then after I went to the internet and found the medications, the problem with
going to the internet though is you don't have access to it, so you have to do it through
a tech, and I didn't know this tech would take note of me doing it, which they did, and
so that was that.
The hardest thing about the hospital really is lack of internet connection, and lack
of computer.
Not every hospital is like this, but the one that I went to Fairview was, was definitely
like this.
So let's, let's go on to, to my experience of schizophrenia, which I touched on a little
bit already, but I'd like to touch on more.
There is a couple of things, I'm going to play for you this clip from this one woman,
and there's a couple of things that I really resonate, that really resonate with me and
this woman, I'll, I'll tell you about them after the, after the clip.
It's like inside my mind, it switched, my mode of thinking switched from understanding
people in the world and accepting them, accepting how they felt about me, you know, if it was
good or bad or whatever, it was like something was coming up, my anger was coming back up,
and I could no longer keep it down, I couldn't control it, I couldn't squelch it.
And so what came out at that time in my mind, I think I crossed over for mental health to
mental illness, and I didn't start to hear voices until a couple, maybe a month or two
later, but inside my mind, it was like, I figured, oh, now they're going to find out,
now they're going to hate me, now they're going to find out what I'm really like inside,
and they're going to hate me.
And so shortly after that, I did begin to hear voices, but yeah, well, what was the voices
like, what did they say?
For me, it was hate voices, and it has been, because the voices have continued on ever
since then.
But for me, my voices aren't from a disembodied source, I think I've heard a disembodied voice
inside my head only once, I remember in my life.
But most of the time, my voices, they seem to come from other people in the environment,
somebody walking by, driving by somebody, I mean, mostly strangers, people.
But for me, it mimics reality, and at the same time, I know that I have skits affected
Georgia, because there have been times when I know I've hallucinated something.
I used to hear my father say, I'm sick of it, I'm just sick of it, and I know that he
didn't say that, and I heard my neighbor, a friend, say something to somebody about me,
and I know later on that she never said that, and I believed her.
And so I realized, wait, I am hallucinating.
But for the longest time, I thought it was real, I thought I deserved it, this is reality,
this is what's coming back to me for what I'm like inside, and I deserve it.
And that feeling of deserving it actually became, it was hard to diagnose, because even
though I was hearing all these voices and was flooredly psychotic, and nobody really knew
what was wrong with me.
So my parents likely used to take me to a counselor, and the counselor would try to talk to me,
and no matter how much they talked, they couldn't turn my fuss around.
But finally, my counselor told my parents, well, she can't be helped, so they took me
to a psychiatrist.
And within five minutes, a psychiatrist says, you have schizophrenia, you have depression,
you need the medication, I'm going to give you this, this is an illness, you can get
over it.
It's not something you're doomed to feel the rest of your life.
And the idea that it was an illness, that was new to me, very, very, and enter my family
to know that there was a name called schizophrenia that explained what I was going through.
So once I was on medication, medication was strong enough, I also noticed a very profound
change in my thoughts.
It's like before, my thoughts had been like a whirlpool, just obsessing, thinking, thinking,
thinking, thinking, how can I get out of this?
How can I change myself so people won't hate me?
What can I do to deal with all this hatred?
It was like a whirlpool.
And I remember for the first time lying in bed and feeling like I had just been thrown
up onto the shore.
I had been shipwrecked and the sea and the waves had been crashing over me, and I have
been struggling to keep afloat, and then I found myself on the beach and just resting,
and feeling peace, peace, just for the first time that I ever remembered.
And then I remember the first day I said, you know, this was a good day, I hadn't had
a good day for anything I can remember.
The, I think that's a really powerful clip, I hope you enjoyed it.
There's a couple of things that resonate with me in that clip, one is I've never had
anyone describe what my hallucinations are like, and they're very similar to hers.
One of the first hallucinations I had was I was in the hospital at HCMC, and one of the
texts was telling me something as they were dealing with my possessions, and they told
me that they were here to punish me.
And it took a while to realize that maybe they didn't actually say that, and maybe I
heard that, and they didn't actually say that, and there's a couple other instances during
that stay where I would hear things like that, where I'd be too far away to hear them,
so here's something, or things like that.
The other thing that really resonates with me is her feeling that she, if they knew
they would, they would hate her.
And I've struggled with thinking that I'm possessed, and that I'm evil, and if people knew
that I was evil, if people saw what I would, what I'd see, and how I felt, and how I thought
that they would think I was evil, and because I am evil, and I'm possessed with things
that aren't me, I'm possessed with thoughts, and various other things that aren't me.
That's another thing that really resonated with me.
So, thank you for listening to that clip, I really appreciate it.
What I'm on now is a couple of drugs, a couple of anti-sacotics, I think I went through,
I went through a few anti-sacotics, and we finally settled on these two, let me find
my container here, yep that's it, those are, and that's risk for it all, my primary
anti-sacotic, and, which is, anti-sacotics, I mentioned this in our last episode about schizophrenia
that anti-sacotics have a lot to do with neurotransmitters, and blocking them, blocking dopamine, or,
I mean, having you be able to accept glutamate, or things like this, dopamine is a big thing,
Thorazine worked on dopamine and blocking dopamine, there's a theory that schizophrenia is
caused by a chemical imbalance, and that neurotransmitters are the key, I don't know if I believe that
necessarily, there's a lot of other theories, there's infectious theories, there's viral
theories that schizophrenia actually is a retrovirus, that we all have that's triggered
in some people, and I think that's really interesting, because viruses can target specific
areas of the brain, rabies for instance, and they think that schizophrenia is the pathology
of the frontal lobe, and perhaps is a virus that targets the frontal lobe, and so those
are my anti-sacotics, thanks for listening to them, shake.
The last thing I want to touch on is anasignosia, which is a word that means lack of insight, that
you aren't aware that you're sick, this is especially prevalent when it comes to schizophrenia,
or a schizophrenic person might think that they're not schizophrenic, anasignosia has never
really been part of my life until recently, let me explain, I never thought that I had
lack of insight, I always thought that my insight was pretty fair, and I still think it
is, but I've noticed a pattern that I think my drugs are placebo, and so I don't take
them, and it's when I'm sick that I don't think my drugs do anything, and that I shouldn't
take them, because they aren't doing anything, everything is psychosomatic, and so I shouldn't
take them, and that comes and goes, I used to think anasignosia was denial, but I don't
think it's denial, after I heard that people with a heart of dyskinesia, there are cases
with people with a heart of dyskinesia, a movement disorder that's caused by anti-sacotics,
some people believe that they don't have a heart of dyskinesia, that is until they're
shown a video of themselves, and they go, oh yeah, I have a heart of dyskinesia, and
then two weeks later they'll forget and go, yeah, well I had it then, but I don't have
it now, despite the fact that they still have a movement disorder, and that coming back
to it really resonated with me, because I come back to my drugs being placebo, sometimes
I believe this, sometimes I don't, right now I'm fairly healthy, and I don't believe
that my drugs are placebo, but I know I will come back to it, and that's a very hard
thing to express what that feeling is like, and so in that way I do have a bit of anasignosia.
Thank you for listening everyone, that's pretty much all I wanted to touch on, I'm happy
that you listen to this episode, and leave comments if you want to, and take care, bye-bye.
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