I’ve kept a journal for the past eight years–since I was twelve, and it’s one of the best things I’ve ever done for myself. My journals have come in all shapes and sizes, and I’m currently using a black hardcover notebook with silver polka dots on the front. I like it because it’s small and fits in my purse easily. Here are some of my entries from the past week or so.
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.
Ever since I started experiencing psychotic symptoms, I’ve had a really hard time with religion. Going to temple is just inviting the voices in, and prayer only stirs them up and gets them screaming at me. I don’t even know how to start a conversation with God. I thought God hates me, or even that God isn’t real. I’d basically given up on having any kind of spirituality in my life, which was a big deal, considering I previously wanted to become a cantor. I was recently hospitalized because I was suicidal and having flashbacks to a traumatic childhood event. While I was in the hospital, I had an illuminating conversation with the hospital chaplain. After talking to him, I felt lighter. The chaplain, Tony, told me that God must love me because God made me, and She doesn’t make garbage. God loves Her creations, and God can be whoever I want her to be, so I decided that God is a woman. If God loves me, then She has to understand how devastating it was to be hurt by men. I love women so much more deeply than I could ever love a man; I connect to them; I understand them; I laugh with them; I ache with them. I am sure that God, that my God, is a woman, and She loves me.
As a child of God, I have no right to hate Her creations. If I can love my own creations– my photos and my writing– then I have to be able to love the person that God made me. So that’s it. After a lifetime of hating myself, I’m going to do something about it. I’m going to love myself. It’s hard, and it’s weird, and I don’t know what I’m doing, but I’m managing. I am learning not to tear myself down, but to build myself up– or at least keep my head above water. I am loved from all around. My parents love and support me no matter what I do. My elementary school classmates have stuck with me through my very first hospitalization to college; I don’t think they would have done that if I was the bad, worthless friend I thought myself to be. My English professor from last semester stopped me at work to tell me I’m a spectacular writer. I doubt he was doing that just to be nice. I have my friends from GSA who I always have fun with. And of course, there’s Christin, who pours so much love into our relationship that it’s almost impossible to believe I’m not everything she says I am.
I’m learning that it’s painful to love someone who doesn’t love herself, and I don’t want to put people through that pain anymore.
I’m finally gaining insight into all the nights I spent crying in my mom’s arms telling her I would do anything to see my collarbones again. She would tell me that I was beautiful as I was, and I’d argue with her because I hated myself so much I couldn’t understand how anyone could see any goodness at all in me. I have learned firsthand that you can’t plant self-love in someone else. That’s why it’s called SELF-love– it has to come from inside. Christin has inspired me to make a change in myself. If she can treat me as caringly and lovingly as she does, then I’m going to return the favor to myself because I am worth that much. I no longer say mean things to myself. I don’t tolerate it. I’ve gained enough confidence and self-respect not to let anyone else talk to me the way I talk to myself, and I’m not going to be a hypocrite and continue to treat myself like trash. I am a good person. I am smart. I am valuable. I am kind. And yes, I am beautiful.
Happiness is not getting on the scale and seeing that you’ve lost weight. Happiness was what I experienced today. I went out to brunch with Christin, and we walked on the beach where we tried to feed stale matzah to the birds. On the drive home, we held hands in the car, and I felt truly present in the moment. We had the windows down, and I wasn’t obsessing over my hair getting messed up or my makeup running. Why would I have wanted to think about that when I could have focused on the beautiful girl sitting next to me laughing at my passenger seat dancing and holding my hand? I was grateful to live in such a beautiful place, grateful that God brought so many wonderful people into my life, and grateful to be in love.
At age fourteen, I was a mess of contradictions. I felt like no one cared about me despite the outpouring of love I received from my family and friends. I thought my parents hated me and sent me to treatment to torture me and make me fat, not because they were at a loss for how to help me and only wanted me to be happy and healthy. I thought my boyfriend only liked me for my body, which couldn’t possibly have been true because I was well on my way to emaciation, and he put more than enough thought into my wellbeing.
At the same time, I didn’t want anyone to care about me. I often confided in my journal and to my therapist that I wished people would simply give up on me and let me self-destruct. I wished my boyfriend wouldn’t beg me to eat. I wished my mom wouldn’t confiscate my razors. I wanted people to leave me alone and let me drown in self-loathing and unhealthy behaviors. I ignored the people who loved me, misinterpreting their concern as an attempt to control me, and I was repulsed by any act of care or kindness because I felt like I wasn’t worth it.
These days, I have a little more perspective than I did when I was first diagnosed with anorexia and depression. Sometimes, I still wish people would just leave me alone and let me self-harm or starve myself. But I’ve also learned that I can’t have it both ways. If I want to have meaningful relationships in my life, I can’t immerse myself in my mental illnesses.
If I did everything alone, or went everywhere with only Ana, things would be different. I could have purged that night at Hamburger Mary’s. But my friends were there, and Oxana followed me into the bathroom. She didn’t do it because she was mad at me or trying to control me; she did it because she was concerned. My little freak-out really scared and upset Christin. She knew exactly what I was doing when I headed towards the bathroom, and she said she felt “defeated,” when she saw me leave. That’s not how I want the people I care about to feel. I don’t get to have it both ways. I can’t care about my friends and girlfriend and not expect them to care about me in return. If the roles were reversed, and Christin were the one with the eating disorder, I would want to do everything I could to help her on her journey to recovery. It only makes sense that my friends want the same for me.
Anorexia is loneliness. It is not strength or hard work. It is a potentially fatal disease that I have to fight. My ultimate anorexic fantasy was as follows: I live alone in my own apartment. I don’t have a refrigerator because I don’t ever buy anything to put in it. My cupboards are bare and empty. I have a coffeepot that I use frequently, and I feed my dog more often than I feed myself. The fantasy never involved any friends, a girlfriend, or even a roommate. Letting anyone get close to me meant that they might care, and having someone care about me meant someone coming between Ana and me. I couldn’t have that. I see now how miserable and lonely that fantasy is. I would much rather have a full life, complete with friends, family, and Christin.
Food is not just necessary. It is fun, pleasurable, and it can bring people together. Today, I have a nasty cold, and when I told Christin that I’m sick, she offered to make me some soup. She loves to cook, but I told her not to bother with all that because I didn’t feel like I was worth the trouble. I was self-conscious at the thought of my girlfriend seeing me in sweatpants and a t-shirt, and I had been too tired to even take a shower. I fell asleep, and the next thing I knew, she was at the door with a container of homemade soup. If I was still my fourteen-year-old self, I would have been terrified that someone cared about me that much, but today I was just happy to see my lovely, gourmet-cooking girlfriend. I ate the soup without a second thought, and it was delicious. Ana was nowhere in sight; she wasn’t whispering in my ear that I needed to purge as soon as Christin left, or that I wasn’t allowed to eat dinner if I ate the soup. Sick people should have soup. It’s a fact of life. When someone I care about cooks for me, I want to be able to enjoy it wholeheartedly, and not obsess over calories and the like. That’s exactly what I did today. I can only hope it means Ana’s grip on me is loosening.
Ana is getting more than a little clingy. Last weekend, I went to the fair with Christin and Kerry, our friend from GSA. I love fairs and carnivals. I brought my camera and got some shots I’m really proud of.
I rode a ride that went upside down, which was something I’d always been too scared to do in the past, and I got Christin a caramel apple even though she told me not to, and it put the biggest, most adorable smile on her face.
Still, I wasn’t as happy as I wanted to be. Eventually, we got hungry and decided to eat something. I was really, really hungry, but I didn’t want to eat. Let me rephrase that. I wanted to eat. I wanted to enjoy fried food on a stick, something I’ve always loved (I mean, who doesn’t?) and not think about calories when I could have been laughing at the powdered sugar all over Kerry and the water he spilled on his crotch when his friend leapt up from the table to buy fried butter on a stick. (No, I’m not making that up.)
But instead, even with Christin’s hoodie wrapped around me, Ana was whispering in my ear that it would be better if I didn’t eat anything, and if I did, I’d better slip away from my friends and purge. “You can just pretend that the rides made you sick,” she said. Ana isn’t exactly the brightest. She tells me lies, like that my friends will like me better if I don’t eat, that I’ll like myself more if I’m half my size.
Ana also showed up uninvited at the GSA movie night/pajama party at my house last Friday. There was pizza and a plethora of desserts, but she kept dragging me away from Christin to remind me that I “couldn’t” eat anything. “I’m having fun with my friends,” I told her. “Who cares if I eat a slice of pizza? That’s half the fun.” Still, she wouldn’t leave me alone.
I’m sick of Ana crashing my parties. On Friday, the GSA is going to Applebee’s to sing karaoke, and even though the event is four days away, I’m already worried about what I’m going to eat. Nevermind the fact that I’m learning a new song and I’m going to rock it at karaoke, the fact that a bunch of my good friends (including Christin) will be there, and the fact that Applebee’s has this amazing chocolate cake I love. Ana has already tried to convince me that I can’t have the cake. At the fair and the pajama party, I let her win, but she’s actually given me an advantage this time. Since I started worrying so far in advance, I’ve had time to check out the Applebee’s menu and devise a plan of attack. I already know what I’m going to order, and it’s something I want, not what Ana wants me to eat. I WILL get that chocolate cake, and I’ll share it with my friends. Time in college and time spent with the GSA is about making memories and strengthening friendships, not isolating myself in eating disorder hell.
I’m posting this article to keep myself accountable. I’m making a promise to myself that I’m going to order the pasta dish and cake I want, not diet water and air, or whatever it is Ana will try to get me to eat. I have escaped Ana’s clutches in the past, and I will do it again and again and again.
Ever since I read Life Without Ed, I’ve thought of my eating disorder as a relationship with a really unpleasant bitch named Ana. She’s terrible. She’s always putting me down, calling me fat, and trying to control me. She hates my friends, but tags along to every lunch outing to make sure I don’t actually have fun. Every time I say I’ve had enough and that we’re done, she cries and says she’ll change, that this time it will be different, that she loves me. And I fall for it every single time.
Meanwhile, I’m dating a wonderful girl named Christin. She makes me incredibly happy, and I love spending time with her. She accepts me for who I am and lifts me up. She thinks I’m beautiful the way I am, and I’m slowly learning to believe her. She supports me through the ups and downs that accompany my mental illnesses, and she wants me to be happy and healthy.
If I had to choose between Ana and Christin, it would be a no-brainer. Do I want to be with the girl who thinks nothing I do is ever good enough, the girl who will never like me unless I change everything about myself? Or do I want to be with the girl who likes me just the way I am, who appreciates the things that make me who I am, who sees good things even in the parts of myself that I don’t like? The answer is obvious.
Still, for some reason, I end up clinging to Ana as if I can have meaningful, fulfilling relationships with her and Christin. The reality is that I cannot. Last night I went to the local drag venue/burger joint with Christin and some other friends. It was my idea to go, and I was looking forward to it until I started thinking about what I was going to eat while I was out. Ana wasn’t invited, but she heard that we were going out, got jealous, and I reluctantly agreed to let her come. She told me that she’d love me more if I didn’t eat dinner, that it would make me prettier and more desirable. I ended up ordering something really small, much to Ana’s dismay, and I ate about half of it.
Immediately after I ate, I fled to the bathroom in the middle of the show to contemplate
purging. I ignored the fact that I was in one of my favorite places, surrounded by good friends; the fact that a place like Hamburger Mary’s celebrates acceptance and loving who you are, and Ana was screaming at me to do the exact opposite of that.
Before I could do anything detrimental, one of my friends came to check on me, and I returned to our table.
It doesn’t make sense to cling to “people” like Ana. She’s cold, cruel, hateful, and mean. I don’t want people like her in my life. I’m breaking up with her once and for all. This is the end.
In all honesty, I haven’t been prioritizing recovery lately. I’ve let anorexia creep back into my life, and it’s making me miserable. Today, I went out to lunch with my girlfriend and some friends from the GSA. I would have liked to have been able to spend the afternoon catching up with everyone and planning our next excursion to the local drag venue. Instead, I obsessed over calories, compared my plate to everyone else’s and hid in the bathroom debating whether or not to purge.
This is not the life I want to live. I am more than an eating disorder, more than a jeans size, more than a number on the scale. Things are going so well for me right now. I’ve made a ton of friends at school. I’ve assumed a leadership position in the GSA, and I’ve been running meetings recently while our president is otherwise engaged. I have a beautiful, lovely girlfriend who makes me incredibly happy. I’m teaching myself new skills in Photoshop so that I can do more with my photos. I have a new idea for a novel, and I’ve even been writing poetry again. So why have I slipped back into self-destructive behaviors?
Letting people get close to me is hard. When I was a freshman in high school and dating my first boyfriend, I didn’t know how to use my voice, so I used behaviors instead. I would self-harm on areas of my body I didn’t want him to touch. I would purge when I needed him to pay attention to me. I would talk about how much I hated myself to get him to tell me how great he thought I was. My relationship with him set the framework for all of my future romantic relationships, and I am trying to unlearn some of those old patterns. Back when I was fourteen, it was easier to put up a wall of mental illness and self-destructive behaviors and let people get close to that than to let someone get close to the real me.
But the real me is more than a list of labels and diagnoses. I’m more than an anorexic, more than a person with psychosis, more than a lesbian, more than a trauma statistic, more than one single word or idea. I am a daughter, a sister, a best friend, a girlfriend, a writer, a photographer, an artist, a GSA leader, a teller of bad puns, a clumsy dancer, a bow-tie-wearer, a good listener, a learner, a questioner, a Jew, a granddaughter. I am the person my friends can count on when they’re desperate. I am the “mom friend.” I am constantly learning and growing. Why would I ever want to slap a label as confining and static as “anorexic” on myself when I contain universes more than an eating disorder?
I’m not sure who the person under the layers of self-hate and self-destruction is, but I’m going to find her, care for her, and love her. She’s worth it.