I was never sure if the lightbulb was a magical amulet or just something I needed to take to Lowe’s so I could find a match for the burnt-out fixture in my bedroom. Once I put it in my purse, I felt very sure that it must never leave my possession.Read More
This morning, I woke to find the words “KILL ME” and “RAPE MEAT” written in Sharpie on my chest.Read More
I spent most of my morning with my mom at Quest Labs waiting to have my blood drawn for the second time this week. Clozapine, the drug that is supposed to stitch the seams of my sanity back together, requires extensive blood work. It seems there is something wrong with my liver, most likely caused by Depakote, the mood stabilizer that sometimes makes me vomit because swallowing pills is hard and those pills in particular are about the size of my thumb.Read More
When I started this blog, I was in residential treatment getting help for my eating disorder for the second time. I wanted a way to mass-blast my close friends and family back home with updates on how I was doing and what I was learning in treatment. I wrapped every essay up in a little bow and proclaimed that I was growing stronger every day, as if recovery from an eating disorder (or any mental illness) is a linear path through a Zen garden which one walks down while therapists chuck coping skills like rose petals at your feet.
I have not been doing that well lately, and I am really lucky to have an amazing support network of family and friends to lean on. However, I realize that when I call my friends during a psychotic breakdown, it puts a lot of pressure on them and they don’t know what to say. I’m writing this article mostly for myself and for my friends, but also for anyone who may be at a loss for how to help a person with psychosis.
Sometimes it’s hard to differentiate what symptoms are being caused by which disorder, or even what’s a hallucination, what’s a delusion, and what’s paranoia. Actually, let’s talk about that for a second. Hallucinations, delusions, and paranoia are all symptoms I experience as a result of schizoaffective disorder. Hallucinations are hearing, seeing, and feeling things that are not there. (Some people also smell and taste things that are not there, but I do not experience this.) I often feel like bugs are crawling on me, and I can see the bugs out of the corners of my eyes. Sometimes I see cameras or other electronic surveillance devices where there is nothing. I often hear voices, or a single voice named Henry (He is a snake who lives inside my body.) insulting me, saying that I’m promiscuous, telling me I’ve done terrible things or that terrible things will happen because of me, and telling me to hurt myself or others.
Delusions are fixed, false beliefs that do not line up with reality. I have a paranoid delusion that a man who hurt me when I was a little girl is stalking me via electronic surveillance devices and a network of spies. As you’re reading this, you probably think that sounds far-fetched. I do not. Recently, this delusion has furthered, and I’m convinced that my world is all a simulation controlled by the man who hurt me (I refer to him as the Angel Man.) and that I have to hurt myself badly enough to wake up and “save the children,” so they don’t get hurt like I did. I don’t know who or where these children are, only that they’re in danger, and I was put in the simulation to save them. As I’m writing this, I realize that it makes absolutely no sense. That’s why it’s a delusion. It doesn’t line up with reality.
Paranoia is a little harder to explain. In a lot of ways it’s like anxiety, but times a million. It’s a sense of dread and fear. For me, it centers around the delusion that I’m being stalked. If I hear a weird noise outside, or one of my dogs starts barking at nothing, I immediately start worrying that there’s a dangerous person in my yard who’s going to rape and murder me.
Now that we’ve covered the basics, let’s talk about what to do in a crisis. It’s always a good idea to ask me if I’ve taken my medicine. I almost always remember to take it, but it doesn’t hurt to check just in case.
One thing that really doesn’t help is telling me that whatever I’m hearing, seeing, or thinking isn’t real. It’s very real to me, and it’s just frustrating for everyone to get into an argument about what’s real and what’s not. If you tell me that something isn’t real (the children I have to save, for example), I will get frustrated and tell you that you’re not real, and there’s pretty much nothing you can do to convince me otherwise. (My dad actually won that argument by showing me a list he made at a self-improvement class in 1998. It was a list of things that bothered him, and number sixteen was not getting enough “Daddy and Doodle” time. He’s Daddy. I’m Doodle.) Anyway, you can ask me what evidence I have that I have to save the children or that I’m in a simulation, or of whatever’s bothering me. I might get mad at you for poking holes in my delusion, but in the long run, you’re helping me, and once I calm down, I won’t be mad anymore.
A lot of my hallucinations and delusions are trauma-related. These are the most upsetting ones because the combination of PTSD and psychosis makes me feel like I am reliving the trauma. I will often say, “I can feel him touching me,” and proceed to beat myself in the face. Obviously, this doesn’t help anything. It’s totally okay to grab my hands and stop me from hitting myself. I’m not always okay with physical contact when I’m that upset, especially if I feel like my abusers are touching me, but if my options are: not hurt myself or have someone touch me when I don’t want to be touched, I’ll sit on my hands or hold yours. Sometimes, I might want a hug, but I’ll probably just want to pet your dog unless you’re my parents or Christin (in which case, I might want to pet your cats). It helps to hear, “He’s not here right now,” or “You’re safe with me.” Sometimes, that isn’t enough, and I get scared that an abuser is going to attack me immediately and that I will have to physically overpower him. Telling me that you’ll protect me or help me protect myself helps, and it really doesn’t matter if you could fight a scary man because there’s no actual danger. Physical contact can be a huge help. It’s grounding and reassuring, but please do not force it on me if I tell you I’m not okay with it. I know that a lot of people’s first instinct is to hug someone when they’re upset, but it doesn’t always help me.
Sometimes, I get so delusional that I don’t make sense. One thing that many people on the schizophrenic spectrum struggle with is disorganized speech and issues with word-finding. I don’t think this affects me, but I can get so upset that I have trouble speaking, and I’ll forget what I’m saying and trail off in the middle of a sentence. (Speech class, here I come!) When I’m really delusional, I’ll forget that not everyone knows what I’m talking about. Today, I went over to my best friend Colette’s house because I didn’t want to be home by myself, and I asked her why we were in the jungle. I was very confused and did not know where I was. I told her that we were in a simulation, and started rambling about how I needed to save the children. She respectfully let me finish (always a good thing to do), and then said, “I don’t know what you’re talking about.” That’s a perfectly acceptable thing to say to me when I’m not making sense. You can ask me to elaborate if you need/want to know more about the delusion, or you can just let it go. Either one is fine, and knowing more about the delusion probably won’t help anything unless I’m telling you I need to harm myself.
I have prescription sedatives for when things get really bad. They calm the voices down, stop me from hyperventilating, and sometimes put me to sleep. These are all good things. The other night, I saw a story on the news about a one-year-old boy whose father killed him with the car in the family’s driveway. It was an accidental death, but I was already delusional and thinking about saving the children, and I immediately jumped to the conclusion that the child died because of me and started to cry. My dad tried to get me to take a sedative, but I wouldn’t because I “needed to be awake to save the children.” The more he encouraged me to take it, the more I thought he was trying to poison me. Finally he told me that I couldn’t save the children if I didn’t calm down, and that got me to take the medicine, and I was okay. It is perfectly fine to indulge a delusion if it’s going to keep me safe. That is so, so much more productive than telling me it’s not real.
Of course, if things get really bad and I can’t calm down or I’m becoming a danger to myself (or others, not that that’s likely), it’s in everyone’s best interest to call my parents.
The main thing is knowing that someone is here for me, which I know all of my friends and family most definitely are. I appreciate all of you who’ve sat through the hysterical late-night phone calls, who’ve held me while I try to stop the voices, and who listen to me and love me in spite of everything. You’re all amazing, and I am lucky to have you in my life.
I am lucky enough to have a very supportive network of family and friends who have been there for me through the good and the bad. There’s Jon, the best friend who came to visit me the first time I was in treatment, even though I was thousands of miles away from either of our homes.
There’s my neighbor Colette, who listens to me agonize over questions about sexuality and offers her advice.
There’s Diana, who appreciates my self-deprecating humor about psychosis and endures my rants about professors who throw around the terms “crazy” and “psycho” to describe unusual art.
There are my GSA buddies who totally understand how sexuality and gender are not only
fluid, but confusing as hell! And of course, there are my
parents and brother who have visited me in treatment and hospitals, who have done everything they can to support me through the wild ups and downs that accompany my various and sundry mental health issues. I am so, so grateful for everyone in my life who has offered their support, guidance, and friendship as I try to find my way through the challenges
of being mentally ill.
I know a lot of people who deal with conditions like depression, anxiety, eating disorders, and self-harm. But I don’t know anyone outside of the internet who deals with anything on the schizophrenic spectrum. For this reason, I have a limited number of people who I can go to for support when I am hallucinating, delusional, or paranoid. My friends aren’t at fault here. They want to help, but they don’t know how. Thus, I present to you, Katherine’s guide for helping a psychotic friend.
A few weeks ago, things went downhill really fast. I was home alone, and I was convinced that there was a Bad Person in my backyard who was going to break into the house, rape and murder me, and film the whole ordeal to put it on the internet. To make matters worse, my dogs, who normally bark at everything, weren’t barking because they had been replaced with fake dogs who were going to attack me if I tried to defend myself; and to top it all off, my dad, who I love very much, was a robot working for the Bad Person. I had no evidence for any of this, but I was afraid nonetheless.
I called my neighbor Colette, who was at a loss for how to help. She encouraged me to take a sedative (for which I have a prescription), and suggested locking myself in the bathroom until my parents came home. She said if I locked the door, it would have an “impenetrable lock,” through which no bad person could enter.
People with psychosis are not stupid. We may be somewhat out of touch with reality, but most likely, we are not going to believe any old thing you tell us. You might try to instill a fear of monsters in a young child in order to teach her a lesson, but people with psychosis are not children. When Colette told me that the bathroom door had an impenetrable lock, I knew she was making it up right away.
Encouraging me to take a sedative was definitely the right thing to do. As-needed medications can quiet the paranoid thoughts, and sometimes even quiet the voices.
One thing Colette kept repeating was, “But you know it’s not real, right?” If I knew that the Bad Person in the backyard wasn’t really there, I wouldn’t have called her in a panic. Just like you should never tell someone with an eating disorder that they don’t look like they have one, telling a person with psychosis that their delusions/hallucinations aren’t real doesn’t help. It’s just frustrating for everyone. The best thing to do if your friend comes to you and says, for example, that there is a stalker in the backyard would be to tell them that they are safe, or ask them what evidence they have for this. Sometimes, people with psychosis can realize that their fears are unreal or irrational on their own, but it’s nearly impossible for someone else to convince us that we’re being unreasonable.
My biggest piece of advice to anyone trying to comfort a psychotic person would be this: just listen. If your friend came to you and said they were sad for no reason, you wouldn’t try to tell them that they’re being stupid or that their feelings are invalid. The same holds true for people with psychosis. When I called Colette, I was alone and afraid. All I needed was someone to listen to my fears and tell me I’d be okay.
Colette is an awesome friend. She convinced me to call my parents and tell them what was wrong, and she called me back to make sure my parents got home. She talked to my mom and told her what was going on so that my mom could hear it from someone who was making a little more sense than I was at the time. She’s one of the few people from high school with whom I’m still friends, and I’m very grateful to have her in my life.
It is one thing to be a natural photographer, but it is another thing entirely to be a great photographer. The natural has no trouble learning how to operate the camera to create the desired effect, and easily learns to use Photoshop, the darkroom, or both. A great photographer, on the other hand, creates impressive images that speak for themselves, beautiful works of art with meaning behind them.
I would not go so far as to call myself a great photographer, but I can say that I come by my art naturally. My grandpa was an amateur photographer. He collected cameras and their accessories, and saved every manual and lens cap. My family used to tease Grandpa about how long it took him to compose a shot, but as I’ve gotten more familiar with shooting in manual mode, I’ve gained a newfound respect for Grandpa’s patience.
Over the summer, I took my first formal photography class. It was an elective at my college, taught by an enigmatic gentleman named Gary. Gary encouraged his students to eschew the rules of composition. He thought modern-day artists should have come up with something better by now. He didn’t want us making formulaic photos– he wanted us to make art.
There are not many times in life that one is given the opportunity to see the world differently. All my time spent behind the camera allowed me to see beauty in the ordinary. And when I was diagnosed with schizoaffective disorder, I saw the world through new eyes once more.
I don’t want to tell you this. I don’t like talking about it. It embarrasses me for people to know that my perception of reality is so far removed from theirs. But I’ll say it. I have a stalker. I don’t like to say his name or write it down, so I won’t, but that doesn’t make him any less of a threat. He implanted a tracker in my body, and one day– the day I stop believing in him– he will find me, rape me, and kill me. If you were to ask my psychiatrist or any of the staff working at the psych hospital where I wrote this essay, they would tell you that this person is not stalking me. Yes, he is a real person, but I have not crossed his mind since our traumatic encounter over a year ago. They would tell you he has neither the resources nor the desire to track me via electronic surveillance and a net work of spies. It sounds, well, it sounds crazy, doesn’t it? Maybe I am.
When I first learned my way around the darkroom, I found my new safe place. Under the dim red lights, my only concern was properly exposing my negatives to the light-sensitive photo paper. Sometimes, other photography students joined me, and we all watched our photos come to life in the basin of developer.
The camera became my reality check. My photos never bespoke the voices in my head, the stalker who lurked behind every closed door, the weird flashes of light I saw in my backyard at night. The camera is truth. Sometimes, I would see things I hadn’t previously noticed in my prints: a tree in the background, a shadow in the corner, a strand of hair across someone’s face. No matter what I may have believed to be reality, the camera saw things for what they were.
Even a workhorse like Grandpa’s Canon AE-1 cannot predict my future. It has no idea if I will be murdered tomorrow. It can only show me what’s in front of me. This is not the story of how my psychosis was cured and I never had another symptom again. This is the story of how I’m making it work. If I could trade in my cluttered, malfunctioning mind for a shiny new one, I wouldn’t. I have a state-of-the-art digital camera to work with, but I am still drawn to the charm of my toy cameras and of Grandpa’s camera. I love the vignettes, the light flares, and the accidental double-exposures. These cameras are not broken– they have simply fallen out of fashion and been replaced with something newer and supposedly more efficient. There is something to be said for clinging to what you know. And of course, there are perks of change. I don’t know if reality and I will always be estranged former lovers. I don’t know if or when I will find my way back to sanity. There is no graceful way to end a story that is still being written. All I know is that truth is lodged somewhere in the inner workings of my camera, and that is enough to keep me going.