My mom is amazing in so many ways.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
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.
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.
Part 1: The Dream
A complicated house. People everywhere, an open bar that I’m desperately trying to avoid, chaos, nudity. I just want to be alone. I am lost. (I have variations of this dream frequently. I’m always trying to get to my room so I can be alone. I’m lost, always lost. The dream ends every time before I ever achieve my goal.) I make it to the top floor of the house. It’s a single room, large and round, littered with junk and trash. There is a jacuzzi tub that’s on, but not being used. And T is there. The ex-boyfriend. The meth addict. The rapist. My rapist. I am terrified. I am frozen. I am angry–until I see that he is holding a hairbrush. (I always used to tell him that I wanted to brush his hair. He has beautiful hair. It’s down to his waist, curly, and blond at the ends. It’s always in his face, and he runs his hands through it constantly, but to no avail. It was messy and wild, just like him, just like “us.” It would have been beautiful if he’d let me brush it with a bristle brush and give it body and volume. My hair is too short to brush, so I have no idea where my old bristle brush is. I haven’t used it since I was in high school. I never did get to brush his hair.) So in the dream, I soften. I love him in the dream. We are together again, we are at peace, we are a couple, we are in love. I take the brush from him and begin to brush his hair. I cannot see his face. I cannot make eye contact. His hair comes out in chunks in my hands.
In the days after the rape, I was achy. I carried myself around like a shattered doll, afraid to go anywhere, afraid to stop functioning. My life was already falling apart. Failing classes, missing work, and the emptiness in my heart after breaking up with my ex-girlfriend. (God, she was happy. What was I? Surely not broken beyond belief. Surely…)
At the AA clubhouse, I alluded to the crime that had been committed against my body. I cried on the porch a lot. “Nick” told me I should pray for my rapist, and I bristled. He said I would feel better. I told him that was bullshit. Maybe I just wasn’t willing to “go to any lengths.” Maybe I wasn’t ready.
Part 2: The Dream (con’t)
[Nick seems like he must stand about eight feet high. He has a voice like Morgan Freeman, and dreadlocks that are probably longer than I am tall. He always describes himself as, “A grateful alcoholic,” He has an “attitude of gratitude.”
He doesn’t understand.]
As I brush T’s hair in my dream, the hairbrush seems to weigh a hundred pounds. I persevere. His hair continues to fall out in my hands, and it obscures his face. As I try to sweep it out of his eyes, he darkens; his hair thickens in my hands, and I am face to face with Nick. He is eye-level with me in the dream, his massive height gone, leaving him all hound dog eyes and somber face. I bring a single dreadlock around from his back and arrange it so that it rests on his chest. No words are exchanged, but some of the knots in my stomach come undone and are as smooth and straight as the dreadlock that rests in my hand.
Part 3: Mi Sheberach (A Prayer for Healing)
“May the source of strength–”
Please, God, give me strength to go on. Give me strength to say this prayer. Please, God, soften my heart. Take away this anger. Please, God, make me less prickly. I ask You to make me the soft hair of my dream, not the spiky brush itself. Help me to walk in love.
“Who blessed the ones before us–”
Dear God, thank You for my family. Please bless my father and mother. Thank You for my brother and his hidden kindnesses. For as much as they get under my skin, I need them there in my veins, raging through the body and keeping me tethered.
“Help us find the courage–”
Please, God, give me strength to pray this prayer. For, I don’t want to say it. I am afraid. I am selfish. I am small. I am imperfect. I am Yours. Is it okay to acknowledge these thoughts? Did some man break me all that time ago? Did You create me to be broken–or to be pushed to the breaking point and to rise as surely as the fertile moon? (Someday, my belly will be as swollen as the moon hanging low in the night sky. Someday, my body will wax and wane with a greater purpose. Someday, someday, someday…) God, grant me the serenity to accept this thing I wish I could change, to make peace with the crime scene that is the body You left in my care. Have I failed in some way, or have You failed me? I am sorry, God. I am so, so sorry.
“To make our lives a blessing–”
God, please let it be Your will that T may recover from his addiction. Please mend his body, his mind, and his soul. Please grant him a r’fuach shleimach, a complete healing. Please let him find peace.
“And let us say: Amen.”
My dad and I are creatures of habit. Every night after dinner, we retreat to the family room where he binge-watches vintage TV shows while I waste time online and listen to music through my earbuds. We do this in silence for hours at a time until we go to bed, and I usually don’t see him in the morning since he has to get up early to ensure that justice is served hot and fresh at the courthouse every weekday.
This routine, though comfortable, isn’t exactly refreshing or relaxing. I find that the more time I spend online when I’m not doing something constructive (browsing Facebook vs. writing this post), the more disgruntled I become. Don’t get me wrong, I think the internet is an amazing thing. I keep in touch with friends who live all over the country, I’ve seen all kinds of inspiring art, I’ve learned new skills (like how to conjugate irregular verbs in Spanish and how to make candy-stripe bracelets), and I have access to pretty much any song I could ever want to listen to. However, all too often I wind up scrolling through various social media feeds for hours on end, only to come up empty when I search for any meaning in the last chunk of time I spent inert on the couch, dead to the physical world.
Tonight, Dad and I changed up our routine for the better. In the week since I’ve been home from the hospital, I have effectively trashed my room (as I am wont to do), and I chose tonight to clean it up. My mom went out with her friends tonight, and I didn’t want to leave Dad all alone downstairs while I puttered around in my room, so I invited him into the big comfy chair where he used to read me bedtime stories when I was a little girl, handed him my laptop, and gave him the rundown of how Spotify works. Within moments, my messy bedroom was transformed into a jazz radio station, complete with “Mike Scott spinnin’ those stacks of wax!” I heard everything from Herman’s Hermits to Phil Collins, and I also introduced Dad to Panic at the Disco, which he deemed, “interesting.”
Since I’ve been out of the hospital, I’ve felt extremely raw, like I’m walking around with no skin. Everything is terrifying, but life doesn’t just stop because you’re scared. I have a lot of free time on my hands since I’m not in school, and unfortunately, I often use that free time to think of all the horrible things that could happen to me and also how every horrible thing that has already happened to me is completely and totally my fault.
I went back to work this week, which I had been dreading. I actually love my job (I’m a cashier in a grocery store.), but I was terrified to have to spend all day in public with no close friends or family members around to protect me should I need them. I know these fears are unrealistic. In all likelihood, no one is out to get me, or is even thinking about harming me. Still, they linger. I was surprised to find that work was actually a great distraction from my fears once I got into the routine. I’m realizing the obvious: the less time I spend ruminating on my problems and everything I dislike about myself, the easier it is to get through the days. I’m very glad I spent some quality time with my dad tonight instead of looking at posts of seemingly perfect lives and yearning for that perfection in my own life, even though I know it’s all just an illusion. I’d much rather have my own imperfect life with all its little twists and turns. Do I wish I was already finished with my Associate’s degree? Do I feel like I should be on my way to a “real job” by now? Do I regret some of my relational choices? Yes, yes, and yes. But that doesn’t have to stop me from enjoying the small things on the road to the bigger things. Being mentally ill doesn’t mean I don’t have goals or the means and desire to achieve them. It does mean that I may achieve them differently than many of my peers. I know high school students who will graduate with the same degree I’m still working on three years after graduating high school. I know teenagers who are living on their own and paying rent, while I’m in my twenties and still living with my parents. I don’t have a fancy diploma to hang on my wall (yet), but that doesn’t mean I’m not allowed to be proud of the things I have accomplished. Progress isn’t always a new car, an engagement ring, or a graduation ceremony. Sometimes it’s throwing out your box of razors. It’s calling someone instead of doing something self-destructive. Progress is getting out of bed in the morning without dreading what the coming hours hold, but instead wondering how you can make the day everything it can be.
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.