Lolly's Inside Out World of Schizophrenia

Lolly's Inside Out World of Schizophrenia Recieved Dec 2004

I was 27, working a new job at a dotcom music company in Taipei when I fell into schizophrenia. My schizophrenia was not about hearing voices - it was about internalizing everything external - If I saw an ugly old woman walking in front of me with a limp, it made me internally decrepit and weak. If my eyes settled on a baby, it meant I was a baby, innocent and joyful inside, but at the same time unable to control emotions or carry a meaningful conversation. The night I fell into schizophrenia I went out with my coworkers to a grand dinner. My young boss sat across from me, across a large, round table with a shabu shabu hotpot in the middle. As the night progressed, the hotpot steamed, and through the steam, my boss began transforming from the whitebread American that he was into an exotic, desirable prince. Something snapped inside my brain and all of a sudden I went from being a carefree chatterbox to somebody tripping out on drugs. Little did I know that the trip would last for almost a whole year and that I was lapsing into a disease that leaves over half of its victims unable to live independently. Though I felt that something unusual was happening to me, I was having fun and I let myself ride into the accentuated reality that took over. The restaurant had tissue boxes on every table that were decorated with Looney Toon figures - that was incredible to me! My coworker handed out small pieces of paper and asked funny multiple choice questions, such as when do you prefer to have sex - at night after dinner or in the morning like a shot of coffee? This made me even more lusty for my boss - I wanted my answers to match his. Then, as we went around the table reading off answers, I found incredibly that all our answers did match! All except for the sex question, to which he preferred morning coffee sex over night time passion. Everything was leading up to a perfect love - a perfect night where my boss and I would fall in love. Whereas a few hours ago, I had looked upon my boss as a rather enimagtic creature who must have yearned for the richness of Asia to be settling down in Taipei without knowing a word of Chinese, now I saw him as a master. A master planner who had planned this night to expose himself in the best light, shabu shabu steam and all, so that he would attract a female mate. I could not talk. I was transformed into a mademoiselle who could say nothing, who could not lift her shopping bags even. My coworkers ushered me to a bar where the tables had paper table cloths and cups of crayons, and a shiny-haired Taiwanese beauty awaited her performance. Two of my male coworkers busied themselves drawing pictures. One drew a large-eared monster, pointed to it and said "This is Brian." I giggled and smiled. Everything was perfect and I was tickled pink like a baby. Then the show began. People began moving tables around and the shiny-haired beauty stepped up to the mic with her voice that was soulful and sultry yet extremely sweet in the way that only Asian voices can be. As I watched her mesmerized, I was transported into the show, becoming first one character and then the next. The show was about wooing and being wooed. I was mentally transported out of the show when a waitress tapped me on the shoulder. I realized I was all alone. I had no idea why my coworkers had left me in a bar in Taipei all alone. I felt as though I had been drugged. The giggle spell was over. The waitress called me a taxi and on the way home I laid down in the back seat and watched pink neon lights twinkle as though I were fading out from a movie into a dream. According to psychiatrist Fuller Torrey, the author of "Surviving Schizophrenia", only 10 to 15 percent of schizophrenics are able to maintain full-time jobs. The day after my grand entry into schizophrenia, I failed to show up to work because I was busy polishing my apartment floor with perfume. Needless to say, I lost my job. My boss told me that I had shown inappropriate behavior by not showing up to work and by putting my hand on his knee at the Taipei bar. He said he had had the most bizarre conversation with me in the morning - a conversation I vaguely remembered as being unrequiting in terms of love. He told me I had other options in Taiwan - I could teach English, or I could see if I could write for the China Post, an English Taiwanese daily where I had interned in the past before obtaining my Master's in journalism from New York University. Unbeknownst to my boss, the night before I had had a truly Godly experience. As I lay in bed thinking about my two past loves, both of which were really one-way crushes, I felt physical sensations in my body that coincided perfectly with my thoughts. I questioned God about why I was sometimes not turned on physically during sexual encounters, and how to generate physical attraction. God answered me in my thoughts, and as he answered me, he created tingles and lovely sensations - mild to intense passion, warm love and even cute, small itches in my body. The sensations were part of the stream-of-consciousness conversation I was having with God. This was ultimately proof that God existed, proof that did not make me any more religious, but gave me comfort that if there was no one else to communicate with, God could converse with me through my thoughts. As I lay alone in my small studio apartment in the heart of the teeming Taiwan University district the night after I was fired, the delusional magic faded. I contemplated what had happened to me and I became frightened. How had I been left in the bar alone? Hadn't my coworker told me not to worry about showing up for work late? What was I going to do now that I was unemployed in a foreign country? My room was in the back of the building, so that it was quiet even though the street outside bustled with hot-cake and dumpling vendors. I heard the cracklings of the room and the humming of the air conditioner as it turned on and off. As my thoughts roamed, all of a sudden I became petrified. The company I had been working for was called MusicZone.com, and I thought what if it was MusicZone was actually a front for an insidious technology that allowed for people to inject thoughts into your head and through low-decible sounds? Luckily for me, my father was living not too far away. He was in Taiwan as a visiting professor, giving physics lectures at various universities from Taipei to Gaoxiong. That night, he happened to be in Taipei, staying at university housing for Taiwan Normal University. Terrified by the sounds in my room, I grabbed a backpack with some clothes and hailed a cab to my father's apartment. For eight months, I was part of the 50 percent of schizophrenics who go untreated for the illness. I was deluded. I believed that the world had changed because it was the year 2000, and that this new world was something that I had to learn to live with, though it tormented me day after day. My father appeared calm as he listened to my story about the insidious MusicZone. I could tell that he did not believe me. He bought me a plane ticket to Hong Kong and sent me to live with my uncle and his family. In Hong Kong, I agreed to see a psychiatrist at the Prince of Wales Hospital. Before going to the appointment, I wrote up an account of what had happened the night I fell into schizophrenia in Taiwan. I verbally explained the night to my psychiatrist, trying to convince him that my co-workers had behaved strangely by leaving me alone. To my dismay, he responded by telling me that I had a psychiatric illness that was likely to last a long time, perhaps a lifetime. He prescribed me 10 mg. pills of Risperdal. The Risperdal made me sleep for twelve hours straight, and the next day, after I took another pill, I slept as I traveled with my aunt and six-year-old cousin on a bus to visit the world's biggest Buddha. I couldn't handle the sedation so I stopped taking the medication, and like 55 percent of schizophrenics who go untreated, I believed that I was not ill. Though it is not talked about as much as hearing voices, one of the classic symptoms of schizophrenia is the inability to separate oneself from one's surroundings, including other people, the television, billboards and newspapers. For me, objects and words took on meanings that impacted on my directly. If I was driving and the car in front of me changed from a New York license plate to a Florida license plate, as so often it did, it meant that I was a tourist in my own city. If trucks came in front of me as I was driving, it meant I was being protected from the city, shielded like a baby. If a truck bearing large words came in front of me, I felt as though I was being screamed at - "FRESH DIRECT". If a truck with small words came in front of me, I felt as though the truck and I were a team, sharing words that were comfortably large enough for only me to see. Unlike many other schizophrenics, I never heard physical voices, but in my head there was a running stream of conversation. I yearned to talk out loud, to communicate with people in a manner other than thoughts, but in this "new world", I could not let out my thoughts and be talkative as I had been in the past. The adults kept me muzzled. After about a month in Hong Kong, I returned to New York City to live with my sister. I was living above my landlord, a Hassidic Jew and ex-strip club owner who I had had a fling with before my illness. I longed to communicate with Barry, my landlord, but I found it impossible to talk to him. Every time I went down to his apartment, I would sit muzzled in front of his TV. I heard Barry's thoughts, and I had conversations with Barry through my thoughts, but I could mutter no words out loud. Finally the tension would become so great that I had to get up and retreat to my solitary room upstairs. I became catatonic. Catatonia is one of the less talked about symptoms of schizophrenia characterized by rigidity and inactivity. The deluded reason that I became catatonic was because I felt that the direction that I was facing - whether my knees were pointing one way or the other, whether I was looking at one person or another or no one at all - betrayed what I was thinking and feeling inside. Every time I moved, I felt that people around me would react in a way that coincided with my thoughts. On the subway, if I allowed my eyes and head to roam freely, I would hear the opening of a candy wrapper. The opening of the candy meant that the candy opener was calling to other people in the subway to try to open me up, to make me say something or do something. Then I would see someone tapping their fingers on their arm. The tapping meant that he or she was waiting for me to start a conversation. The worst feeling was when a pair or group of people carried on a loud conversation. Various words in the conversation would have meaning to me, meaning that the group of people were trying to call me into their conversation. I would become so distracted that I would miss my subway stop. In the U.S., about one-third of the total homeless population are schizophrenic or manic-depressive, according to the U.S. Department of Health and Human Services. At any given time, there are more people with untreated severe psychiatric illnesses living on the streets of America than there are receiving care in hospitals. With the family support that I had, I was not close to being homeless. But I felt an extreme guilt that my sister paid the $1,650 in monthly rent for our three-bedroom apartment all by herself. I put pressure on myself to find work, not only because I wanted the money but also because I had never been without a job since I graduated from college in 1994 with a bachelor's in biology. At the time, my dream job was to work for the Associated Press. Amazingly, I was able to carry on a conversation well enough to land myself an informational interview with the features editor and foreign affairs editors at the Associated Press. The editors told me to come back to fill out an application and take the AP test. I did so and felt that I had done reasonably well. I wanted to start working right away and I could not handle waiting for somebody at the company to call me back. I called the features editor back, and he told me that he had never hired anyone who had not had several years of experience in the general news department. I mistook that to mean that I should begin working on general assignment news, even though no one had hired me to write news. "Work" took on a whole new meaning for me. It meant devoting time to a certain company, rather than being paid and employed by a certain company. Work could also mean helping other people to get to know each other. I began "working" for the AP by assigning myself articles from the AP daybook, which I obtained from the NYU computer lab. Because I believed that I had the best chance of being hired in New Jersey, I would drive to Newark, sit through an event, write it up and send it off to the AP editor in Newark. I also visited the AP building personally and after being left alone in the human resources office for some minutes as the staff tried to figure out what I wanted, I wandered down to the AP lunch room, where the lunch lady asked me if I worked for the AP. This was a torturous question for me, as it had a double meaning. In my mind, I was working for the AP in that I spent time for the company, but I knew that I was not one of their official employees. Finally, I said "No", and was immediately rebuffed with the ring of a cash register that charged me 20 percent more for my tuna sandwich because I was a non-employee. In terms of speech, schizophrenia is characterized by disorganized speech that is sometimes referred to as "word salads", and by the inability to speak. Speech was my greatest desire as a schizophrenic, and my greatest obstacle. I believed that the proper way to speak was to make up stories that had double meanings that were significant. For example, if I were speaking about my sister, I would try to make up a story about Laura, or some insignificant third person. The story was supposed to be funny and to contain significant "calling" words - words such as "drummer", "Brooklyn" or "sweet watermelon" that were appropriate for the person I was talking about. The whole scheme of talking was so complicated it that I never mastered it. I could only tell the truth, and that was rebuffed by my friends and acquaintances, who quickly muzzled me. After days and months of near muteness, I became so desperate for a different life that I sometimes contemplated suicide. Luckily, I had no idea how to go about committing suicide so I did not become part of the 40 percent of schizophrenics who attempt suicide, or the 10 percent who succeed in killing themselves. About eight months after I first lapsed into schizophrenia, one of my friends told me that she was taking me to the hospital. The words "hospital" and "sick" made me feel physically sick, but I agreed to play along because I had nothing better to do. I thought I would spend a day "working" for the hospital as a patient. That day I was involuntarily hospitalized into the sixth floor of Beth Israel Hospital in Manhattan. I tried several times to escape, and once made it into the elevator of the building. Six security guards grabbed my arms and legs, threw me onto a mattress in a solitary room and a nurse injected me in the buttocks with an anti-anxiety drug called Adivan. Days and weeks passed by and I was not let out of the hospital. I spent Christmas, my mother's birthday and New Year's in the hospital. I was put on 10 mg of Zyprexa per day and I began to feel comfortable in the hospital. For the first time in nearly a year, I had some friends who I could talk to - Edith, the loon who periodically called out "OW! MY EAR!"; Ed, the talented piano player who thought everybody looked like a famous actor or actress; Roxanne, the sexy dancer who tried to burn herself with hot water. Within the confines of the sixth floor wards, where my daily activities consisted of eating, sleeping, sharing emotions, drawing, watching movies and playing ping pong, my world slowly returned to normal. I could move. I could talk. I didn't have to make up lies with double meanings. Eventually I wrote myself a letter saying that I wanted to be released from the ward, and they let me out after setting me up with Medicaid and an outpatient plan. In the three years since my release from the hospital, I have followed my doctor's prescriptions religiously, even though 10 mg of Zyprexa made me constantly drowsy and unable to eat much without gaining wait. Over a year and a half period, my doctor gradually reduced my dosage of Zyprexa from 10 mg to 5 mg to 2.5 mg, and eventually to nothing. She told me that I might be one of the five percent of schizophrenics who maintains a full-time job and who never has a relapse. Unfortunately this was not true. In April of this year, following two life-transforming events - the death of my mother and my marriage - I had a relapse of schizophrenia. Though in some ways I had learned a lesson from my first episode, I again began to think that I was supposed to talk in lies. I thought that my husband was trying to make me into a stripper by placing a camera on a tripod in our bedroom. At Rockefeller University, where I was working as a science writer, I thought my computer was being monitored by people in the Information Technology department, and that tapping sounds on the wall were a signal that I was supposed to send off an email immediately. I realized too late that I was becoming sick again. I called my doctor and was placed back on medication, but nevertheless lost my job. This time it did not take me long to recover. After two months, during which I traveled with my family on a big vacation to Las Vegas and Los Angeles, I was back on my feet again with a job as a science writer at a biotechnology news service. Studies show that 10 years after their initial diagnosis, about 25 percent of schizophrenics completely recover. Twenty-eight percent of schizophrenics live independently; 25 percent live with a family member; 20 percent live in group homes; 10 percent living in nursing homes; six percent live in hospitals; six percent live in homeless shelters and six percent live in prisons. My doctor says I have a good chance of being part of the 25 percent who completely recover because I have good insight to my illness and I have always followed my prescribed regimen of medication. I am currently taking 10 mg of Abilify every day. I don't like the medication because it doesn't allow me to eat very much without gaining weight. Also, the medication dulls my energy, making it harder to shine among a crowd of people. But I can't complain too much about the side effects when I know that over half of schizophrenics are unable to support themselves and to live independently. My days now are steady and leave me with a feeling of contentness. Unlike during my initial days of schizophrenia, I am now anchored to a married life, a stable living situation and a healthier diet. I rarely talk about my disease though it debilitated me for a year and changed my life profoundly. It is an elaborate secret that I refer to when necessary only as "sick". "I was living here when I was sick," I tell my husband as we drive through Brooklyn, where just being in the vicinity of my old landlord Barry's house brings back bad memories. My husband reassures me that he will make sure I keep taking my pills so I don't become sick again. "Now you're perfect," he says. The writer can be reached by email at tienshun@hotmail.com.