At age thirty, right around my birthday, something significant happened, and I didn’t really understand what it was: I became a schizophrenic.
I can’t show you physically what I have. It is impossible to prove that I have a brain disease using any scientific test based on current medicine and technology. The diagnosis was and could only be based on what I told doctors about my behaviors and experiences. I never felt there was anything wrong with me or my brain. I never saw a big cut with blood gushing out. I did not have a deadly headache that affected how I lived my life.
What I can do is to tell you a story. I want to tell you about what I experienced from my perspective, with vivid description and my most complete memory. I have thought about this part of my life over and over again during the last decade, looking for logical patterns to make sense of it all. With every reflection and every new experience with schizophrenia, I see my brain and myself more clearly.
This is a personal story from the non-clinical perspective of an independent and educated adult woman with schizophrenia. I hope by sharing this, you can get a sense of what schizophrenia has been like for me, so we can all better understand this incredible brain disease.
Readers’ Impressions
“Becoming Whole is a beautifully written memoir of a woman’s journey with schizophrenia. The author tells the story of her journey in a way that is relatable and well written in its honesty. Schizophrenia is a subject that still to this day is shrouded in shame and mystery. The author talked about Joe, the other within her, with love and compassion. This was my revelation: We’ve long believed that this illness only compels the expression of mental demons and devils, What Ms. Tsai describes is something so much more nuanced and personal. She reminds us through this wonderful memoir that we need to bring a compassion to people with mental differences. This memoir is about the multiple facets of the the human spirit and the struggles to regain ones footing and return to a life. Becoming Whole is about compassion, self empowerment and the complex and messy work of being human.”
“I couldn’t put the book down. Genuinely a well-crafted and compelling story about a woman dealing and learning more about her brain and schizophrenia. More needs to be learned about mental illness and we all need a way to talk about it with each other. Becoming Whole is a nice introduction to schizophrenia. While by no means a comprehensive encyclopedia about the illness, the story helps you learn to be more open-minded to learn more about it. Mindy gives you a glimpse into her brain and her journey to understand her illness. This book is not clinical nor research oriented so it’s also very entertaining and a fun read, even if you have little interest in schizophrenia. Highly recommend you read it one Sunday morning in a coffee shop or on the beach!”
“I found this book to be insightful, disturbing, uplifting and very well written. The first hand account of both how few of “us” know how to deal with or help people with mental illness and the lack of available top flight medical/mental help was highly troubling. The long road, that took years, that Ms. Tsai traveled to get to a much better place was inspiring and gave hope that everyone can move forward.We all know people with mental illness whether we acknowledge it or not.”
About the Cover
The book cover was designed by my good friend Frederikke Tu, a Danish American artist. She drew inspiration from my story and the Swedish artist Hilma of Klint. Frederikke combined the idea of the brain with scientific and mathematical, beautiful and calm images. When I saw her design, the cover immediately resonated with me.Here is how I interpret the cover art: In the middle is my brain. The white sparkles around the brain are synapses that fire in the brain. I have lots of them and sometimes extra ones. The black dot in the yellow circle could be Joe, my first voice and a voice that I thought about often. The yellow circle is everything that happened around Joe. Then the purple circle is everything that happened with voices of my friends and family. All of these experiences light up in my brain. Other experiences are depicted by the black circles. The bottom part is my normal brain, which let me live and work. My brain is split apart.
Acknowledgments
Many people have helped me in finding my voice and putting thoughts on paper. I want to thank Benjamin Yosua-Davis who worked with me through early drafts while I was still puzzling different pieces of my memory into something readable. I want to thank Beth Brinsfield who ensured that I had a strong voice and purpose and connected the dots, so I could say what I wanted to say more clearly. To Bernard Chen and Margery Hauser, as my first readers and collaborators of writing, thank you for encouraging me when I first started searching for ideas and reasons to put words down on paper and share. To my family and friends, Dr. Freudenreich and Deborah, and other caregivers, thank you for reading the countless versions of drafts, starting from the first shitty and fragmented draft and for boosting my confidence to continue my writing journey. Most of all, thank you for being part of my life.
Prologue
On a sunny day, as I was getting ready to go to work, I heard my first voice clearly. Later on, I affectionately called him Joe. It was not like dreaming or having thoughts in my mind. To me, it was having a conversation with a real person whom I couldn’t see. Exactly that. No different. He sounded gentle and kind. He even made me smile.
Joe entered my life when I was truly alone at age thirty. I had just broken up with my boyfriend. I’d gotten laid off from my first job and started a new job. While trying to live on my own again after the breakup, my apartment was broken into. Worried for my own safety, I moved into a house with housemates. I was emotionally isolated, but I didn’t know or analyze the situation I was in. For the first time in my life, I was determined to become a stronger person living my life with only books, music, gym, and work and did not reach out to any friends.
Joe noticed me. In my mind, Joe was a young man my age who hid from me but was always close by. I felt a strong presence through his voice and what I thought he did, but I never saw him in person. Joe started playing music for me by calling into different local radio stations and making song requests. When I turned on the radio, he’d have something ready for me. He loved the challenge of picking the music I loved. He was able to tell I loved a song because I’d start singing along and smiling. Sometimes he surprised me with a song at home, at work, or at the grocery store. I felt he could read my mind by the way he responded to my feelings and thoughts through music.
Joe didn’t want to leave me alone even though I stuck to my routine every day. He started making life fun for me with elaborate hide-and-seek games in the city. When I explored and wandered around Boston, he’d guess where I was headed. I often didn’t have a destination in mind. He played right into my spontaneity. He left clues for me to figure out. One time I was on the T, and he convinced everyone to get off at a certain stop. When I saw the whole train emptied out, I thought, Where is everyone going? Should I follow and check it out too? I didn’t want to miss out.
No one had ever stopped me on the street until after Joe entered my life. I thought he might’ve sent his friends to interrupt me while I wandered the city. A guy showed me a map, asking for directions. Another person stopped me to take a picture of him and his friends. Another man even asked me to take a picture with him. I wondered why, all of a sudden, everyone was interested in talking to me.
At first, Joe brought beautiful feelings to my life. One night, I was wandering on my own at Faneuil Hall. Under the dark night sky, there was a young man standing at a corner, a street performer. He was alone. I was alone. We saw each other, and he started playing his guitar and singing. He had a great voice. It was soft and sweet. After the song ended, I turned around to leave. Someone in the dark from another corner said, “Don’t go. Talk to him.” I was startled. I turned to where the voice was coming from and saw an older man. I didn’t realize there was another person there. I felt embarrassed by my own presence, that I had been discovered. I quickly ran away, back to the T, back home, but I had a big smile on my face because I’d loved the acoustic music. Isn’t it so lucky I ran into the singer all by myself even though it was interrupted by another stranger? Had Joe sent him?
Joe was with me at the movie theaters and gym. His friends were kicking my seat, coughing, laughing, trying to send me hints. What are they trying to tell me? I froze in my seat, slightly confused and startled. I couldn’t focus on the movie. Even though it seemed like something meaningful was being conveyed, I couldn’t figure out what it was. I had no guesses either. In my mind, I just ended up with a bunch of disconnected observations. I would continue to puzzle over them for weeks!
After a frustrating day at work, I went to the gym to run off some steam. In the running room, all the treadmills were being used except one. Left just for me. So lucky. I was moved and encouraged by this room of strangers, all women, running. I almost cried feeling the strong and positive energy in the room, especially after having a difficult day at work. How amazing they were all there with me, for me, because I needed the support. Is this possible? Are they all friends of Joe’s?
I started getting curious about Joe. I wanted to meet him. I wanted to make him show up. One night, after he played several songs for me on the radio, I told him, “Let’s meet tonight!” I put on my jacket and went out. I listened to honking and other signals he gave me and ended up near Fenway Park. I waited and waited under the stars. It was past midnight, but I didn’t care. Joe didn’t show. On the walk home, I heard Joe say, “Go home.” That was the only thing he said to me that day.
Another night, I told him I wanted to go ice skating. I loved skating. “I’ll wait for you in the lobby,” I told him. I waited for him for about thirty minutes. No one showed up. I decided to go on my own anyway. Why spoil the good mood? I went to Frog Pond, rented a pair of white skates, and skated around the pond. A group of guys showed up and cheered loudly. They had signs, but I couldn’t make out what they were. They shouted, but I couldn’t hear clearly what they said. I was startled again. Why are they with me at the skating pond? What are they trying to say? Did Joe send them? This time, Joe did not speak to me at all.
As time went on, Joe seemed to be around even more, and he was able to do more. While I worked, he could see me and my laptop. While I was typing, he corrected my mistakes by moving my mouse to show me what he meant. Sometimes, when I was really focused on an email, he would interrupt me by typing an extra letter to distract me. I thought he wanted to let me know he was there with me.
One weekend morning, I woke up thinking about Joe. I might’ve dreamed about him. It was fuzzy. While in bed, I closed my eyes and started chanting: “Please let him be a real person. Please let him be a real person. Please let him be a real person.” I continued for about five minutes. I really, really wanted to meet him in person. I wanted to ask him about all he might be doing for me: playing music for me, going to places with me, sending me messages.
I believed he got in touch with my friends because I started to hear the voices of my friends in addition to Joe’s. They had parties while I was in my living room. A friend asked me to call her because she hadn’t heard from me in a while: “Call me! You have to call me!” “Let’s play a word game! Complete the sentence for me,” a different friend said. “Let’s listen to music.” They took turns spending time with me. I didn’t understand why my friends were getting in touch with me this way, through Joe, but I was happy to hear from them.
I took a vacation in Taipei. During the two-week trip, I thought of Joe twice. One day I woke up and heard birds talking outside. I thought, is that him trying to get my attention? I didn’t think I would feel Joe’s presence when I was so far away from home. I almost cried. I didn’t want to think about him while visiting my relatives. I felt confused and interrupted.
As our relationship continued, Joe became less amazing. Sometimes he was even abusive. No matter what I asked him, I wouldn’t get a response. He just ignored my questions. At the same time, he wouldn’t stop talking to me either. He could talk to me any time he wanted. The talking just kept on coming. I couldn’t turn it off. I couldn’t sleep. I couldn’t focus at work. I tried different ways to talk sense into Joe. I am not anyone important, I said in my head. Tell me what you want! Are you not bored watching me all this time? I tried to listen very carefully to see what he really wanted. I tried to ignore him, hoping he would go away. Eventually, I stopped living my life and ended up reacting to Joe’s world as many voices talked, talked, and talked.
Eventually, I was locked up because of Joe.
mindytsai etc. 