I wasn’t told right away what was wrong with me. My psychiatrist told me that what I’d experienced was a psychotic break. I gave him notes that explained that I’d been experiencing symptoms for years prior to this episode, and I guess that’s what led him to the diagnosis of schizoaffective disorder. I’d given permission for my parents to receive information from my doctors, as I was pretty out of it and couldn’t understand much, so my dad was the one who spoke to the psychiatrist and first heard about the diagnosis.

While on medication, I still experienced certain symptoms of the disorder.  One night, my left arm was cut up because “they” had wanted to hurt me. I walked out to the room my mom in, held my arm out, and started crying about how they had hurt me and that I needed to go to the hospital and be under constant supervision so I couldn’t be hurt again. We couldn’t afford to put me in the hospital, and my wounds weren’t deep enough to require a trip there, either, so my mom wrapped my arm and put me to bed. By the next morning, I felt better but rather stupid for having cut my arm.

My fear of being shot in the head came back every so often as well, but it eventually faded out as a new fear appeared. I became deathly afraid of birds, especially crows, because I felt that they were spying on me for the Devil. I still somewhat retain this fear. Looking at the sky the other day, filled with crows flying around each other, I became extremely uncomfortable and felt it was a sign of something bad about to happen. I was leaving my psychiatrist’s office at the time, so I felt the two things were connected in some way.

This past month, after a few months of doing all right again and being able to return to school and function properly, I started to decline pretty rapidly. I decided to stop taking my anti-psychotic during the end of October. I believed that it was responsible for my symptoms and that I really didn’t need it. It was causing my heart to beat irregularly every so often as well, which really freaked me out. I was able to function decently for about a week or so after going off the anti-psychotic, but then my grandmother died. She had lived with us and was a second mother to me, and her death sunk me into a deep depression. I stopped going to classes for a bit and was drinking frequently. Then I started to lose my mind again. I kept hallucinating, reading things incorrectly, and hearing voices every so often. I told my therapist about it all and she told me that I really needed to get back on all of my medication again.

Before going to see my psychiatrist the other day, I went through some sort of brief psychotic period. I heard one of the cats speak in English, had an intense desire to brush doll’s hair, paint a collage of colors on the walls, and I kept rearranging words (not to form new words, but just moving the letters around each other). My mom drove me to my appointment and I walked out of the house wearing a shirt I’d been wearing for days, no makeup, and knotting my hair around in front of my eyes. I slumped down in the car seat and then again in the waiting room. I received a lot of stares as I flipped slowly through a magazine, either turning the pages extremely slowly or dragging my fingers across the pages in various patterns before turning the page. I eventually snapped out of it and returned fully to reality while I was in a store with my mom after my appointment. I felt incredibly stupid and embarrassed about how I looked, but there was nothing I could do about it then.

Currently, I’m pretty out of it, but I think that’s due to my body getting used to the new drug (Zyprexa). My first dose was on Monday, and it made me sleep for sixteen hours and then wake feeling extremely drugged. I was able to eat something while being somewhat awake, then it was time for another dose, which put me to sleep again. This morning, I woke up at around 10:30 in the morning, and I don’t feel heavily drugged like I did yesterday, but I don’t feel attached to reality very much. It’s difficult for me to write this, even, but I try to force myself to write and focus on things when I’m feeling this way in order to 1) keep myself focused on something 2) keep a record of what I’m like during these periods and 3) allow others to witness what this all is like. The last bit almost doesn’t count though because I seem to remain fairly articulate when I type, even when I’m fucked out of my mind.

I’ve had to quit school due to how little I’ve been able to function this past month. I’ll be able to finish one course if I can get my mind back enough to finish up some lessons and take two tests next Tuesday, but I don’t know if I’ll be able to do that. We’ll see, I suppose. I’m totally fucked with my photography class though, and I need to email my professor soon and let him know that I’m having health problems. I don’t know how much that will help anything, but I don’t want anyone to think that I stopped going to classes just because I’m a lazy slacker or something.

For all that this mental illness has put me through, and will continue to put me through for the rest of my life, I cannot understand why mental illness seems to actually be something to aspire to these days. I realize that a lot of people (for whatever reason) seem to equate mental illness with genius, but I don’t believe that’s true. This illness robs me of my mind and my entire life. The medication that I have to take to treat it doesn’t make anything any easier, either. There’s nothing glamorous about any of this. Medication doesn’t fix all my symptoms, either, so I’ve had to come up with ways to cope with them when something happens and I’m around other people. I’ve learned to (for the most part) ignore my hallucinations and such if they happen to me when I’m not alone.

Anyway, this is the last of my introduction posts. I hope this has given you some sort of idea of where I’m coming from in all of this. I’ll probably write other posts that go into better detail about who I am and various aspects of this disorder, but I wanted to at least have some sort of basic outline of everything written first.

Please pass a link to this blog around as much as you can.

My purpose in keeping this blog is to inform people about this disorder, so the more people who read it, the better.

I am always open to questions.

Don’t be afraid to talk to me. If I’ve mentioned something that you’d like me to expand upon, feel free to ask.

I woke up early on Monday, January 21, 2008 and started to get ready for work, like usual. I got dressed and made coffee and then went into the bathroom to put on my makeup.

That’s when everything stopped making sense.

Looking in the mirror, I couldn’t recognize myself anymore. I couldn’t remember how to apply any of my makeup, either. While trying to apply eyeshadow, I felt a strong desire to smear it across my cheek instead of my eyelid. It just seemed like the more logical thing to do. Some part of me knew that that wasn’t right though, so I stopped what I was doing.

Suddenly, I was gripped with an intense fear that all of my co-workers who were already working that morning somehow knew what was going on with me at that moment and were just waiting for me to get to work so they could tease me about it. I felt like my every move and thought were being broadcast to everyone.

I started to think that if I wrote out “go to work” twenty times, it would fix everything. I didn’t think I would have enough time to be able to do that before I had to leave though, so I just started writing a mental note to myself instead, in the third person. “Kelley is going to go to work & nothing bad is going to happen to her. Nobody can actually see her thoughts & nobody is going to make fun of her. Nobody hates her. Everything will be okay.”

Ten minutes before I was supposed to be at work, I was standing by my front door and desperately trying to shake the fog out of my head so I could drive. I started thinking about everything I had to do at work and it seemed utterly impossible. I was afraid to go out the door and even attempt to drive because I couldn’t remember in what order to do anything. Nothing was making any sense at all. I started panicking. I woke my mom up and asked her to call in for me and say I was sick and wouldn’t be at work for the day. I didn’t do a very good job at explaining what was going on because I was literally losing the ability to talk for some reason, but she understood enough and called in for me.

From that point on, I don’t remember the exact order of what happened, so this might get a bit scattered.

For most of that day, I thought I was just dealing with a panic attack, but as hours passed and I was still lost in a fog, I started to get scared. I could type and write fine, but I was having trouble talking. The desire would be there, but I couldn’t get the words out for some reason. Even worse, occasionally I would get so frustrated with it all that I’d start hitting myself in the head with my hand. I couldn’t control it; it just happened. I eventually realized that if I wrote down what I wanted to say and read from it, I could talk without a problem, so I started to do that.

I started to think that I needed to go to the hospital or see a doctor or something, so I called around to try and reach one of my parents (both work in the medical field) and ask what they thought I should do. I think I spoke to my dad briefly, but he wasn’t able to talk long, so he had my stepmom call me to get a better idea of what was going on, since she was home and he was working. I was afraid to tell her about everything at first because I thought it all sounded stupid and I didn’t think she’d believe me. There were also parts that I knew on some level were crazy and I was ashamed of speaking about some of them out loud. I ended up telling her everything though. I was crying and gasping for air during a lot of it. I told her that I was sure I was going crazy and I felt like I was disappearing and had very little time to get help before “they” got me. I spoke in very broken sentences because I was still having difficulty talking, but I did my best to explain who “they” were to her–the voices and the creatures. I believed that what was happening was due to the voices commanding the creatures to attack me, but they were being held back in their world because there still existed a very thin barrier between me and them, but I didn’t know how long it would hold. My stepmom reacted calmly to everything and comforted me as best as she could, which really helped, as I was completely terrified and starting to fear for my life.

I eventually talked to my dad an hour or so after that conversation, and he did his best to comfort me as well. He said that what I was describing sounded like I might be dealing with schizophrenia, but he assured me that it didn’t mean anything was my fault or that anyone was going to treat me differently. They were going to get me help. I remember crying a lot during our conversation and pleading that someone get me help as quickly as possible. “I feel like I’m disappearing and I don’t know how to stop it. I’m really scared! I don’t want to disappear!” I choked out between tears.

Long story short, since it’s difficult for me to put these events in order because I don’t remember a lot of it, I called around to various psychiatrists (I had to do it myself since I was over eighteen and nobody else could handle my medical issues, legally) but I either never received a call back or I couldn’t be seen for weeks. I didn’t want to go to the hospital and my family was trying to avoid that as well, so I eventually called a psychiatrist I had seen years before and I was able to get an appointment for that Wednesday.

I’ll end this post here because it’s (mostly) the story of what happened in the physical world during this time. Describing what happened in my head will involve quite a bit of writing and I feel that it should be broken off into a separate part

(ETA: Part II has been deleted for the time being)

This is the part of my story that I’m the most nervous about confronting. I’ve been reading over journals I’ve kept over the past few years that detail certain events that I want to write about here, but I’m still so afraid that I will forget to mention something, or I’ll be unable to write about it in a way that other people will be able to understand. I also feel a bit silly writing about all of this, as it all technically never even existed except to me, which is a concept I still struggle with understanding on some level.

I’m not sure why I’m confessing all of this, but it’s made me feel a little bit better to mention all of this before I continue.

–

Over the years, from about 2004 onward, I’d say, I started to sense more and more the presence of other beings around me. Actually, “creatures” is probably a better term for them. None of them were human. They started out originally as just being grinning faces. Not a comforting grin, but a terrifying grin, usually with extremely long, sharp teeth and hollow eyes. I’d receive flashes of these faces in my head at random moments, or else I’d occasionally see someone’s face transform into it, but then blink and it would be back to normal.

This painting was done in 2004. It was my first attempt to recreate what I was seeing, although I feel it failed miserably:

Over time, some of the faces started to form bodies and turn into something that resembled small children. I stopped seeing them so much all over and started to only see them hiding under tables and desks. It unnerved me slightly, but I didn’t feel really threatened because it was clear to me that they were just kids trying to scare me for the fun of it, not to harm me.

On the other hand, I became aware of the presence of a group of creatures living in my bedroom, and one creature living in my brother’s room, that I knew wanted to hurt me, but my acknowledgment of them was sporadic at the time, and they didn’t become a real threat to me until my breakdown in January of 2008.

The first time I was ever directly threatened by anything was during the fall of 2007. I had fallen back into anorexic habits at the time, and a friend had found out and was scolding me for it, telling me to stop and get over it. We were arguing online through instant messaging, and at some point during our argument, a voice started screaming at me that if I attempted to get better or I ate what I wasn’t supposed to, it would kill me.

I was completely terrified. I had never, ever had one of the voices scream at me before. They had always been looking out for me! What the fuck was going on?! Frantic and unsure of what to do, I pulled up a search online, because I remembered reading something earlier about “the voice of an eating disorder.” I found the page I was looking for, and it informed me that hearing an actual voice was either due to malnutrition / dehydration … or schizophrenia. I didn’t know what to think. I knew all my symptoms over the years were all adding up to one conclusion, but I couldn’t believe it. After all, crazy people don’t know they’re crazy. Right?

I argued on with my friend without telling her about the voice. All I told her was that I couldn’t just stop having an eating disorder. I couldn’t tell her the truth. For as much as she knew about my problems over the years, there was still nothing I could say to prepare her for a statement such as “The voices in my head will kill me if I don’t do what they command” (although that is a great way to break the ice when you’re introducing yourself to someone, take notes).

As 2007 came to a close, I did start to recover from my eating disorder. I hadn’t heard the voice since that night, and it seemed to be gone for good. I got a job cutting up and preparing ingredients for the salads and sandwiches at Panera Bread and everything started to become really normal for me.

Sadly, “normal” wouldn’t last long.

Near the end of January, on a Sunday night, I had a mild panic attack while trying to get to sleep, and had difficulty sleeping at all. It was upsetting, but as the week went on, there didn’t seem to be any sign of further disturbances, so I tried to put it out of my mind.

The one thing I did start to notice, though, was that my memory and concentration seemed to be slipping. Every day, I’d make a list of the order in which I’d go about preparing various food, and suddenly it started to become somewhat difficult to make the list. Putting things in order and keeping everything together in my head just seemed to be something that I couldn’t do very well anymore, and it frustrated me. I just assumed I wasn’t getting enough sleep and was stressing out about the audit the following week though. My inability to remember certain things or keep a list in order was annoying, but it never became severe enough to disrupt anything, so I finished out the week pretty well.

That Friday evening, my mom said some things that sent me spiraling off into a depression about how she had treated me as a child, and I decided to spend the evening drinking in order to cope with my emotions (smart people: do not do this).

After that night, my sanity slipped away from me, and I wouldn’t get a firm grip on it again for over a month.

Talking to my friend online again that night, drunk, I eventually started crying and going on and on about how afraid I was of the creatures who were trying to kill me. I said there was a thin veil between our world and theirs, and it was close to breaking, and once it did, I was totally fucked. I can’t remember everything about that conversation (being drunk and going crazy does that to your memory, you know), but I do know that it eventually lead to the conclusion that I was totally batshit and needed to go back to therapy.

The next morning, I was pretty out of it (which I thought was just a hangover, but it turned out to be the calm before the total psychotic storm took over), but I remembered my conversation the night before, and it was severely unsettling. I didn’t know what was real or not anymore. On some level, I knew these creatures I was afraid of didn’t actually exist, but at the same time, I couldn’t believe they were all just in my head. I just could not accept it. I hadn’t consciously created them, so therefore they had to really exist. They just had to. How could I possibly feel their presence, and the presence of a whole other world in general, if it were all just my imagination? I’m a logical person, dammit. Logical people don’t believe in monsters living under the bed (or by the bed / in the closet, in my case).

I spent the day drawing and trying to figure myself out. This was my entry in my livejournal for that day:

What if all the world’s inside of your head?
Just creations of your own.
Your devils and your gods
All the living and the dead.
And you’re really
all. alone.

(Nine Inch Nails lyrics)

Of course, nobody looking at that would realize what it actually meant. I mean, who would think I was being literal?

The next day, my brain still clouded, I drew some more, and called up a therapist I hadn’t seen in months in order to schedule a new appointment and figure my shit out. I feared for my sanity, but I was happy that I was taking steps to get help again. As I mentioned in Part I, I’d usually kept this side of things away from therapists, fearing they wouldn’t believe me, and I still feared that reaction, but I was at least glad that I was willing to talk about it now and acknowledge that it was possibly a real, serious issue.

I went to sleep that night fairly hopeful for my future and ready to go back to work the next morning and return to some sort of normalcy.

Normalcy apparently didn’t want me.

In March of 2006, I was sent home from my job (at that time I was serving fast food in Target–a truly glamorous job, to be sure) because I wasn’t making any sense to anyone. My speech was very fragmented and none of my sentences were connecting with each other. The inside of my head felt clouded. A co-worker asked if I’d hit my head recently, but I told her that I hadn’t. I was ordered to sit down and drink some water, and when I still couldn’t snap out of it, I was told to call in a replacement and just go home. How I managed to drive home without crashing still amazes me.

I believe I fell asleep at some point after arriving back home, and I woke up sometime later to find my mom sitting on the edge of my bed. I told her what happened and then started crying uncontrollably and saying that I needed to go to the hospital.

To be honest, this whole period is a giant blur to me because I was pretty out of my mind. I just remember that everything stopped making sense, I was crying and screaming a lot for no reason, and I was eventually brought to a mental hospital.

It was my third time being placed somewhere, but the first time I’d been anywhere as an adult, and the first time I was put somewhere besides a psychiatric ward. Before being lead inside, while looking over my body and taking notes on all the self-inflicted cuts and burns (mostly scarred by that point), one of the nurses told me I was too pretty to have so many problems. For some reason, I remained polite, and smiled as best as I could in reply to that comment. Later on, other patients would tell me I was too young to have problems (at age twenty, I was the youngest one there, along with a boy who I’d gone to high school with [we had a laugh about that]; everyone referred to me as “the baby”).

Too young. Too pretty. There is no such thing when it comes to mental illness. I never understood how people could think such things. Logically, if I were so pretty, why the hell would I apparently be “choosing” to destroy it and be ill? For attention? I already received attention! For much better things! I know that people giving me these comments meant them to be taken in the best way possible, but it ended up making everything worse. I started to convince myself that I was just creating problems for some reason, that none of them were serious and I was just a spoiled bitch who loved drama. I felt like nobody took me seriously, and it caused me to close up about all my issues, especially those dealing with how I viewed myself.

I’m digressing a bit here though.

I only stayed in the hospital for a weekend, and then I asked to be released because I didn’t feel like being there was helping me at all. I was put on an anti-depressant and sent on my way, everyone still believing that I was dealing with bipolar disorder, myself included. I came to the conclusion that what had happened at work was just a severe panic attack, probably brought on by how little I had been eating at the time (due to my eating disorder). Since my breakdown this year though, I believe that what happened in 2006 was another precursor to everything, as the two episodes shared many similarities. But at the time, after getting out of the hospital and returning to work, I pushed it all back and tried to forget about it. I certainly didn’t think it was significant for any reason.

The next (and last) precursor occurred in the summer of 2007. It was then that I developed my fear of walking.

Yeah. Walking.

I didn’t want to walk because I knew that my legs would snap in half if I did. For two or three days, I’d wake up in the morning, pull myself onto my computer chair (it had wheels and could therefore transport me easily), and use that to move around as much as possible. If I absolutely had to walk, I’d hold on to whatever I could while I moved, and I’d crouch low to the ground.

I seriously looked fucking ridiculous.

I eventually got a hold of some elastic knee supports, and I realized that wearing them made my insecurity about walking disappear. As long as I kept the supports on, I could walk just fine. The only problem was that I couldn’t wear them all the time, as they cut off circulation quite a bit, and I certainly couldn’t wear them in the shower. Curiously, I don’t remember anyone inquiring much as to why I was wearing the supports, but I think I probably just made some logical excuse as to why I had them on and that was that. I mean, who was going to suspect the real reason, anyway?

I don’t remember how long this lasted, but one day it just .. stopped. Although, just like my delusional fear of being shot in the head, it wasn’t gone forever.

I don’t remember the exact moment when I started hearing voices, but I know I was around fifteen or sixteen years old when it started. Back then, I only heard them when I was lying in bed at night. They weren’t speaking to me, and they weren’t speaking about anything in particular, either. Sometimes they weren’t even speaking words, it was just sounds. Most of the time, it was as if I’d picked up a phone and was listening in on a conversation that meant nothing.

You’d probably assume that I would have run screaming to the nearest hospital pleading for them to lock me up forever in response to hearing voices that I knew weren’t real, but (wait for it) it actually really comforted me to hear them. I looked forward to hearing them, and was disappointed when I didn’t. They lulled me to sleep. Sure, there was a side of me that was a bit concerned about everything, but for the most part, I didn’t worry about it. The voices weren’t talking to me, so clearly I wasn’t crazy or anything.

But then a day came when I was spoken to directly.

The incident occurred the morning after I had spent the night at my dad’s house (for some reason I can’t recall right now). He was re-organizing some rooms of the house at the time, one of them being the room I was sleeping in. The bed frame leaned against a chest of drawers, and he’d put the mattress and some sheets / pillows on the floor for me to sleep on. I woke up in the morning, and a voice said to me, “Move out of the way, the bed frame is going to fall.” I did as I was told without hesitation, but nothing happened. I was a bit disturbed that a voice in my head had just spoken to me, nay, commanded me, and even worse, I’d listened, but I just shrugged it off. After all, it had been warning me about something concerning my safety, not telling me to kill my parents or something. What was the harm in that?

There were a handful of instances after that initial incident where a voice warned me about something, but I can only clearly remember that first time. Even though the voices (and let me clarify, there were voices, but there was no distinguishing them from each other) spoke to me, and it started to happen frequently, I still didn’t think there was anything wrong with me. I mean, general knowledge on hearing voices is that it only happens to people like David Berkowitz (the Son of Sam killer who claimed that a demon possessed dog commanded that he kill people). I wasn’t being ordered to hurt anyone, and the voices weren’t even threatening at all! I couldn’t see anything wrong with any of it.

Therapists would ask me over the years if I heard voices and if they told me to do things (I was being treated for bipolar disorder at this point in time). Sometimes I would tell the truth, but usually I wouldn’t mention it at all. I saw no reason to. Yes, I heard voices, and yes, they gave me commands, but they were just looking out for my well-being, not making me a threat to society or myself. I honestly didn’t think anyone would believe me if I told the complete truth. For starters, I was a teenager. I never felt anyone took me seriously, even in therapy. I was always afraid that I’d just been seen as an attention seeking liar. Lots of people I associated with in high school would brag about being on anti-depressants or cutting themselves or whatever it was that they thought would make them look completely outrageous and interesting. I never understood it. I’d been placed in therapy and medicated before I was ten years old, and it had always been something I’d been deeply ashamed of and hidden from everyone. To witness people actually bragging about everything was a complete shock to my system. And it made me doubt myself. For years, I hadn’t believed there was anything wrong with me, but around age twelve things really did start to screw up and I started to slowly accept that I probably needed help. To have everyone around me in high school be in the same treatment that I was made it all seem like a joke to me. After all, how could we all have the same problems? I started to believe I was actually completely fine; therefore, the voices were just a figment of my imagination. I was just being a teenager and inventing problems to look cool, obviously. This was all further cemented in my head by various boyfriends I had at the time who would dismiss all that I told them and say I was being histrionic .

Hearing voices wasn’t my only symptom though, although I still didn’t believe this all meant anything.

While walking with friends down a sidewalk one day, I saw a large, black dog running towards us. I waited for it to slow down or turn to avoid us, but it just kept heading straight forward. As it neared me, it leaped. I screamed and fell to the ground, covering my face.

Seconds passed and … nothing. I cautiously brought my arms down and saw my friends standing ahead of me and casting confused glances in my direction.

“What the hell was that?” one of them asked.

“Where did the dog go?!” I demanded.

“What dog?”

“What the fuck! The dog. The big fucking black dog that was running towards us!”

Blank faces. I decided to shut up.

“Nevermind.”

That was the first hallucination I remember having, and the only one that I’ve responded to with witnesses present. I didn’t hallucinate very much back then, but it would worsen over the years (which I will expand upon later).

My delusions, on the other hand, have been around for as long as I can remember, but they didn’t start to really disrupt my life until around when the voices started.

I’ve always felt like some faceless / nameless someone is out to hurt me. I have a lot of rituals that I feel keep me safe from this happening, such as always sleeping with my back to a wall, keeping my bed away from windows, keeping curtains closed at night, etc. I’m terrified of sleeping, to be honest, but that’s beside the point.

I started my first job when I was seventeen, at a dollar store. I worked as a stocker / cashier during afternoons and evenings until close (around nine or ten o’clock at night). I spent most of my time in the front of the store, which was made of a wall of glass windows. I am absolutely terrified of open windows at night. I don’t feel safe around them because I feel they make me an easy target (since, if lights are on, it’s usually impossible for the person inside to see outside, while outside anyone can clearly see what’s happening inside and be kept hidden by darkness). Most of the time, I kept my cool around the windows though. I talked myself through my fears. I didn’t want to make a spectacle of myself in front of the managers or, hell, anyone.

One night was especially hard for me to deal with though. It was near closing time, and I noticed a pick up truck parked in the parking lot. There was hardly anyone in the store, and as people came and went, nobody seemed to be the owner of the truck. I kept telling myself there was nothing to worry about and I was just being stupid, but a very real fear started to creep up over me. I became convinced that someone was in the truck aiming a gun at my head. Since I had to stay around the registers, I kept moving about in whatever way I could. I bent over behind the counter a lot and pretended to be sorting through things. I was absolutely petrified to raise my head above the counter for any reason because I thought I was going to die if I did. Eventually I think I was called to the back for some reason, and when I returned to the front, the truck was gone.

It’s taken me years to even realize that that incident was a delusion. At the time, I truly believed in all of it.

–

I’ve exhausted myself writing this, so I’m going to stop here for now. More parts to come.