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 haven’t updated the blog in a while. Part of this is because I’ve been living life, working, etc. I also don’t need the constant validation I did when I was younger of being the “Best Sick Person Ever!” and a pat on the back for eating a PB&J when all I could think about was how much weight it would make me gain.
The truth is, I don’t think about food much anymore, and I have been afraid to give voice to some of the more serious issues with which I struggle. I’ve seen so many doctors, therapists, and counselors that I’ve had pretty much every label from autism to borderline personality disorder slapped on me, only to be given a new diagnosis the moment my worn-out Birkentstocks and I shuffle into a new-to-me professional office, one in which I will undoubtedly cry at some point.
I’m currently reading Elyn Saks’ memoir The Center Cannot Hold, at my mom’s recommendation. It is the story of a woman who, all while developing schizophrenia, completes a Doctorate of Philosophy at Oxford, and then gets a law degree at Yale. While I can’t relate to Elyn’s incredible academic achievements (though I did get all straight A’s in seventh grade), I relate to every other aspect of her story.
I am not schizophrenic, but I do have schizoaffective disorder, a combination of bipolar disorder and psychosis symptoms. And I have not been doing well lately.
The first time I heard a voice no one else seemed to hear, I was lying in a hospital bed at Florida Hospital Deland’s psychiatric unit, being treated for suicidal ideation. I’ve been admitted to this unit so many times that I’ve lost count, so let me be the first to tell you that it is boring as all hell in there, which was why I had nothing better to do than lie in bed and stare at the ceiling, which seemed to be breathing.
And suddenly a voice growled, “Beautiful girls drink bleach.”
Drinking bleach has never been part of my suicide plan. I had no idea where this was coming from, and I was terrified. I ran to the nurses’ station, and one of the nurses told me I’d probably just heard the TV from the day room.
From that hospital, I was transferred to Magnolia Creek, the long-term treatment center where I started this blog about five years ago. So, the trouble began. I started to have strange thoughts: the other patients in the center were out to get me, they were gossiping about me when I wasn’t there, my roommate was a murderer, my food was poisoned, a snake was living inside my body.
The snake became a vivid fantasy–a delusion that plagued me for years to come. He called himself Henry and spoke to me as he slithered throughout my body. I imagined that I was hollow, or that my organs were like beans in an under-stuffed bean bag and that Henry had lots of room to roam. At first, he was my friend. We’d have long, internal conversations where he told me how well I was doing in treatment. He inflated my ego, gave me a sense of superiority over the other patients.
Magnolia Creek is near Birmingham, Alabama, way out on a dirt road, and surrounded by a hunting range on two sides. The center was not locked; patients were free to explore the grounds and move about, but we were not to leave the property. The only exception to this rule was if the patient was accompanied by a staff member.
One day, I was walking with my therapist, Krista, and we crossed over a bridge. I don’t remember what we were talking about, but I was enjoying being outside in the beautiful woods. As we crossed over the bridge, I looked down into the stream and saw a horrifying sight. In the water lay a dead deer, most likely shot by a hunter, thrown into a truck bed, only to have fallen and landed in the water. It had been there for a while, it was bloated, rotting, with its limbs and head at odd angles. I have never been one to scream in terror or burst into tears (it takes a lot to make me cry), so I gasped in shock and immediately turned away. Krista remained calm and we went back to the center.
As I lied in bed that night, Henry called up the image of the deer. I couldn’t get it out of my head. “Stupid bitch,” Henry said. “Why did you do it?”
“Do what?” I asked him.
As my time at Magnolia Creek wore on, Henry became increasingly aggressive. He constantly insulted and belittled me, insisting that I was responsible for the death of the deer. I had been sexually assaulted while under the influence of illicit drugs mere months before my admission to the Creek, and he blamed me for that too. “If you eat it, you’ll feel better,” he insisted over and over. He didn’t mean the delicious food that chef John prepared for the patients. He was referring to the deer. He would cajole and plead, “Just one bite… Just go touch it… Just go look at it… You know you want to eat the deer… Eat the deer… Eat the deer… Eat… Eat… Eat…”
Finally, I was discharged from Magnolia Creek. The staff claimed they had done all they could for me, and that they could not treat schizoaffective disorder, or whatever might have been wrong with me, as I hadn’t been formally diagnosed at the time. I felt abandoned. My sanity was fraying, I was falling apart, and nothing felt real. I was terrified to go home and return to school and work feeling like this. But I did. For a while, I managed. I joined my college’s Gay-Straight Alliance, met my first real girlfriend, and made an abundance of friends. On the surface, things were going well. I made decent grades, socialized, and wasn’t excessively depressed.
Soon, things turned sour with my girlfriend. I was having an emotional affair with a man twice my age, and as much as I tried to deny it and hide it from her, it couldn’t have been more obvious. I started to drink alcohol in excess, often stealing it from my girlfriend because I was only twenty and didn’t have a fake ID. Alcohol and anti-psychotic medication don’t mix well, so I stopped taking my medication.
Over the following four years, I bounced in and out of hospitals, treatment centers, and doctor’s offices. I alienated the friends I made in the GSA. They graduated and went on to other things. My girlfriend and I broke up, and I fell apart. She got engaged to another girl who was even younger than I was about six months after our breakup. I was crushed.
The only constant in my life was Henry. I woke up to his presence, I fell asleep to berating me. I tried to cut him away, starve him away, head-bang him away… Nothing worked.
I tried all sorts of different anti-psychotic medications. They’d help for a little while and then they’d just stop working. The psychiatrist I was seeing at the time accused me of using other substances besides what she prescribed. She would order “blood work,” and when I arrived at the lab, I would find out she’d actually ordered a drug test because she wouldn’t take my word for it that I was not on drugs. She accused me of not taking my medication, as if I wanted to be sick, as if I enjoyed the terrifying voice of Henry, the paranoia, the delusions of persecution, and the tactile hallucinations that made me feel as though I was being eaten alive by cockroaches.
Within the last year, I switched therapists, and my new therapist referred me to a new psychiatrist who is amazing. He listens to me, believes me, and wants to help me. Things are looking up.
Today is Wednesday. Therapy day. When I arrived in my therapist’s office, clad in sweatpants and a stained hoodie, she asked me how I’ve been in the past week as she normally does. Nothing came out of my mouth. When I’m conversing with acquaintances from school or work who aren’t aware of my precarious state, it’s easy to say, “Fine, thanks. You?” In my therapist’s office, my guard is down. I’m comfortable, often barefoot, and wrapped in a blanket on her comfy recliner.
“Nothing seems real,” I finally told her. “I can’t think clearly about anything. And I have a really bad cold.” I wanted to tell her about the dead bird I saw on Clyde Morris Boulevard on the drive home from my psychiatrist’s office yesterday. I wanted to tell her how I haven’t been able to stop thinking about that bird, how once my mom dropped me off at home, I got in my car and went back to find the bird with the intention of eating it, or at least touching it, but all I did was take a few photos of it on my iPhone, and how that didn’t feel like enough, how nothing I ever do feels like enough. But I didn’t tell her that. I couldn’t get the words out. I was humiliated because even though yesterday that behavior seemed perfectly rational, today some part of me knew it was–as my psychiatrist put it–bizarre.
My girlfriend Rebecca and I have been together for about a year now. She’s seen me bouncing off the walls when I’m manic, hunched over in fear with PTSD flashbacks, and completely stable. I’ve seen her struggle with her own demons as well. We do our best to support each other through it all.
Last night we had a long conversation about what it means to date someone with a schizophrenia spectrum illness. She confessed that, at times, she doesn’t know how to handle me, that talking to me when I’m delusional is like trying to talk to a drunk person, that when I tell her someone is out to get me or that I have special powers, she takes on my fears and beliefs too.
I learned long ago that my mental illness doesn’t just affect me, but everyone who cares about me. My mom has spent countless hours writing up lists of questions to ask the psychiatrist du’jour, my dad has spent equal time and effort fighting battles with our insurance company trying to get them to cover my extensive list of pills and hospital stays. None of that compares to the lifetime of emotional support my parents have given me.
I saw my mom shed a tear when my psychiatrist explained some of the more serious side effects of the new medication, Clozapine, I will be starting as soon as my lab results are back. My white blood cell count could be dangerously lowered. I will have to have blood tests and see my psychiatrist once a week for at least the next six months. I could have seizures, I cannot drive, I will probably gain weight. It’s all a matter of give-and-take. I have to make sacrifices to earn my sanity back.
In Elyn Saks’ memoir, she describes her descent into madness with such clarity that I feel like I am reading my own journal. She believed that everyone thought the way she did, but that everyone else had better means of coping with it, that she was somehow defective, and alone in her defectiveness. One advantage of having been mentally ill for almost half my life is that I have always known there is something abnormal about me. So when I first heard that voice declare, “Beautiful girls drink bleach,” I knew it was a sign of a significant problem.
I am lucky to have some insight into my condition. I am what mental health practitioners would call, “high-functioning.” I still have a job. I have a college degree. (Albeit, a two-year degree that took me four years to finish, but a college degree nonetheless.) I have a few friendships and a romantic relationship. And I know that other people don’t have snakes living inside their bodies.
This doesn’t make it less real to me. Telling me that, “It’s not real, it’s all in your head,” never makes anything better. In another post on this blog, I wrote a short guide for how to help a friend with psychosis, and I stated that it’s very important to know that you can’t use logic to wrench someone from the grasp of a delusion. When I am delusional, there is usually very little, if anything, that can be done for me, save to listen to me if I am willing to talk. (Unlikely.)
My fantasy world is comfortable. There are rules here. I have a purpose.
My fantasy world is terrifying. There are demons and monsters, Bad Men threatening to kill me or worse.
I have more faith in the pharmacological industry than I do in God. I haven’t said a prayer since I can remember, except a simple candle blessing for the Hanukkah lights. If Clozapine can’t bring me back to reality, I don’t know what will. I do know that my psychosis is not some moral failing, that it won’t go away if I simply “try harder,” words I have permanently emblazoned on my left wrist. This is a lesson it took Elyn much longer to learn.
I don’t know if I will every be completely symptom-free. I hope that someday, I won’t constantly be looking over my shoulder for killers, paranoid that people are stalking me, or convinced that I am not human. All I can do is take the medicine and see what happens.
I would like to continue updating this blog. I am isolated and alone in my psychosis, chasing down dead birds on the side of the road and filled with violent urges against my roommate’s cat. I have never met anyone else who has these thoughts, though I know there are people like me out there. I feel as though I am standing on the shore of the beach I live close to, unsure of whether my feet will carry me to the peaceful sand where I can observe the world with clarity, or into the unruly ocean where I won’t be able to open my eyes at all.
I must take control of what I can.