I’ve been on Clozapine for about a week, going up on the dosage as my doctor had instructed, when things took a for the worse. I started running a fever, my body ached, I had chills, and I wasn’t making sense. When my mom woke me up this morning, I had a temperature of 104, and irately told her, “Avocados!” when she asked me if I knew where I was.
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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.
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This morning, I woke to find the words “KILL ME” and “RAPE MEAT” written in Sharpie on my chest.
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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.
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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.
In the unfamiliar house, the walls are lined with demons. A locked closet is a sure sign of death to come. “Kill the dog! Kill the dog! Kill the dog!” Two men holding a puppy in a framed photograph in my temporary bedroom, the one on the right has red-eye (something about film photography, my darkroom days. Sometimes I am still a person.) and he is a demon watching me. I imagine information bouncing off the walls, and my hands are a key part of this exchange, only they’re trembling and scarred from picking at my own skin. Sand pouring through fingers. Benzodiazapine-induced sleeps, the best sleep I’ve gotten this month. I hope my roommate remembers to feed my cat. “Kill the dog… Kill the dog… Kill the dog.
***
Mental illness doesn’t take a break for the holidays. I’ve known this from my own experiences for about nine years now. My family knows this. I’m incredibly blessed to have an extremely supportive family, and they don’t give me a hard time if I have to hide in my old bedroom during celebrations, or if I choose journaling by myself over watching A Christmas Story for the forty thousandth time with them.
Still, there’s that nagging idea in the back of my mind that if I even so much as waver during the holidays, then I’ll have singlehandedly ruined them. I put so much pressure on myself to be perfect (all the time, but especially now), that I invariably end up doing something “wrong,” and feeling like a failure.
I’m with my parents visiting my brother in South Carolina for Christmas as I write this. I don’t like to travel. It makes me extremely paranoid and anxious to be away from home. None of these fears are reality-based. It’s not like I’m afraid that I left the oven on before leaving, or forgot to change my cat’s litter box.
My mom found a vacation rental-by-owner in Columbia where we’re staying. There is a locked closet in my bedroom, a vintage photo of two men holding an old dog, and some books about Jesus (among other things). Ordinary items.
***
The one person who might actually have any insight into this mind isn’t answering my messages. He’s dead and it’s my fault. The demons got him. He hates me and never wants to speak to me again. He never even existed in the first place.
“Kill the dog.”
Six years old in the Winne-the-Pooh nightgown. (Don’t think about it.) He took what wasn’t his to take. (Don’t think about it.) “He told me not to tell.” (Shut up!)
Selfish. Self-centered. Narcissistic of you, really. Thinking about yourself when there are little girls being raped by the Bad Men.
It’s my fault.
It’s my fault.
It’s my fault.
(Don’t think about it.)
You can save them.
You can save them.
You can save them.
Powerless.
It hurts too much to think about.
***
Somewhere in the back of my mind there are things called “coping skills,” things I’m supposed to do in times of distress to soothe or distract myself. When I really need them, I can’t think of a single one. It seems like there’s nothing to do but ride these awful waves of paranoia out to the bitter end. The more I indulge my own delusions, the more elaborate they become until I can’t differentiate between reality and fiction.
I wanted to write something beautiful and haunting about being away from home during the holidays with psychosis, but I’m spent. In past years, I’ve obsessed about calories and clothing sizes, as most holidays center around food. My eating disorder isn’t completely in remission, but it’s gotten a lot better. Sometimes I feel like I’m playing a macabre game of whack-a-mole with my mental illnesses. One gets better, and another gets significantly worse. I can’t win.
When I was initially diagnosed with schizoaffective disorder, I looked at it as a death sentence. I will probably be on medication for the rest of my life. Unless there is a major medical breakthrough and a cure for schizophrenic spectrum disorders is found, I will probably always have some degree of disconnect from reality, always hear voices from time to time, always at least partially believe my delusions, always have episodes of paranoia, always see things that aren’t there.
I’m not going to say that these things “make me who I am,” or “keep life interesting.” They make my life hell. They inhibit my ability to do basic things like work and go to school. They make me distrustful of others and of myself. There is no resolution to this illness. Just periods of remission and stability followed by extreme lows.
***
Snake inside your body snake inside your body snake inside your body.
1, 2, 3, 4, 5, 6.
Save the children. You have to save the children. Children are dying because of you. Little girls are being raped because you’re evil and filthy, and if you set yourself on fire, all the pain will stop, everyone will be safe. They’ll all be safe. You can save them.
(I couldn’t save myself when I was small. Nobody could. And now I have a snake inside my body who hates me because I didn’t want to run away from a treatment center and eat a dead deer in 2014.)
Someday, I will find a resolution. I may not be able to save every child, but someday, I will be a mother and a teacher, and I can touch the lives of a few children. Maybe I already have.
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.
