It’s Logical!

“It should always be remembered that the behavior of persons with schizophrenia is internally logical and rational: they do things for reasons that, given their disordered senses and thinking, makes sense to them!” -Torrey, E. Fuller. Surviving Schizophrenia. 1983. Page 49.

“The ideas I had about supernatural beings came to me the same way that my mathematical ideas did. So I took them seriously.” -John Forbes Nash Jr.

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My friend J read a draft of my memoir. He was surprised that my story was not chaotic or filled with confusion. He made me want to tell my story even better, even more, to show that my experience did all made sense to me. I took very deliberate steps to make sense of what was happening to me and around me.

Let’s start with hearing my first voice Joe. For the 30 years of my life before that moment, I had trusted my ears without any problem. I have pretty good hearing. When I first heard Joe talking, I looked for where the talking was coming from, for someone, for speakers, or anything that might broadcast the voice. I did not understand how “he” was able to talk to me that way. So I continued to investigate. I thought that there might be some smart technology being used. I heard the man talking! That was real to me! I tried to understand what “he” wanted! That’s usually why someone talks to another person.

Another example is that my senses became super acute. I noticed so much more from my surroundings. You can relate to this. Someone coughs loudly in front of you and makes sure that you see her. We do this all the time! Could be for fun, for joke, for giving you a hint by saying something while coughing. Another example. Someone puts up a V sign with their fingers at a sport game. We all know that means victory! So, when I start noticing everything around me, it felt like they should mean something. More people were coughing around me, so I thought, is this a bad winter? I did not say to myself, why am I all of a sudden hearing more coughing. I just did. Everyone did. I wondered why! I tried to understand what they or that meant!

Is it really logical to say “I hear someone talking” or “so many people are coughing” then conclude that “I have schizophrenia?” Ironically, to me it felt more like taking a leap of faith later, when I was told to take a pill and not being told why and what it would fix.

My strategy of dealing with things that I don’t understand is to use my brain to logically break down and solve the problem. Similar to what Nash said, I was the same person when I triggered schizophrenia. I tried to solve schizophrenia with logic. I am glad other people’s experience and perspectives described in Surviving Schizophrenia echoed mine and why they don’t think they were crazy or mad either.

Instead of thinking that people with schizophrenia would typically behave abnormally, I suggest we think of it as people being presented with and experienced abnormal things first. These things could be visual, auditory, or sensory. Think of these as “external” stimuli, not internal! That’s the perspective I am asking you to have. Schizophrenics are just trying to make sense of it all like everyone else with life. Sometimes, to deal with things that don’t make sense, you might have to do something different or unusual. Having reactions are appropriate and expected human behaviors!

Really, it’s a broken brain in charge!

 

Being a Research Subject

Right before I was discharged from McLean hospital, I was asked to participate in a clinical study. I had never done that before and was very intrigued by it. It made me feel that I was doing something good, using something I uniquely had. I had a brain people were interested in. I felt useful.

A gray-haired doctor came to interview me about my schizophrenic experience for about two hours. We sat face to face in my room. He asked all kind of questions and I answered as best as I could. What was the first time I experienced an episode? How did I feel? What does living in a glass house mean? While I was talking, he took copious notes. I just kept talking. He did not stop me from going on and on. His expression welcomed it. He took time and went through his big binder flipping through each page, asking and writing.

Another young woman came to me after that while I was at the hospital and told me that there was a second test that involved taking MRI scans. I had never been in an MRI. I again happily agreed to take the test. The young woman who ran the study came to my room to take me to the MRI lab. She told me that it was hard to schedule a scan since so many people needed the scan time. I imagined that it would also be an expensive test. When I got to the lab, she explained me to what was going to be done. Then I lay in an MRI tube listening to different audio clips for a few hours while the machine took pictures of my brain and body. Sometimes, I was asked to answer questions by pressing buttons using my fingers. 

When I first participated in studies at McLean, I did not know what these studies were. I did not think to ask.  After I was discharged from the hospital, I decided that I wanted to continue to give something back. I was so grateful for the care that I received at McLean. So many people took such a good care of me. I was fortunate to benefit from modern medicine and science. I should do my part to help others. I could look for more opportunities to participate in more studies.

I got in touch with Mass General Hospital and Harvard University, in addition to McLean, participated in several more research studies. The studies ranged from logic tests, memory tests, (which I was very bad at,) simple questions and answers, MRI scans as I listen to sounds or watch images, brain wave scans, to keeping a social diary every day for a few weeks, to open-ended conversational interviews.

I became more comfortable as a research subject. I started asking researchers I met more questions, about their methods, and why they were doing what they were doing. I met a graduate student at Harvard who had a brother who had schizophrenia. She wanted to understand more of the world that her brother was in and to know if social interactions would help with schizophrenia. I met another student at MGH who was studying how schizophrenia affects cognitive abilities. I met another graduate student at McLean who wanted to know if looking at the brain wave patterns could help detect a psychotic episode.  

I asked researchers when they were planning to publish their studies. I wanted to know if there was any new breakthrough in the field of schizophrenia, especially if I was one of the data points. Often, the answers I got were always something like. “We are collecting the data first, which would take x years. Then we have to analyze the data and look for evidence. That will take some time. After that, we can decide if there are any findings that are significant.” It takes a lot of work to make a breakthrough. There are a lot of people working on making lives better for people like me. It’s not easy.

Not only did I gain a deep appreciation for McLean, I also met many others outside of McLean who are working on improving the lives of people with schizophrenia. Researchers and doctors were trying to find a way to identify schizophrenia through brain images and waves. During the first three months that I was lost in my thoughts early prevention might have stopped me from triggering a schizophrenic episode. There are cases of people who only experienced one psychotic episode in life. I could have been one of them. Other researchers focused on improving ways to live with schizophrenia, such as developing social support. If I had someone to talk to during that first three months, perhaps I would not have gotten stuck the way I did or avoided my hospital stay.

When I talked to my therapist Deborah about participating in studies, she asked me, “Why do you want to be a lab subject?” I told her that I wanted to do my small small part. That was the only thing I could do for others like me. She surprised me by reminding me to focus my time and energy on my own life first. I will, I promised. But I don’t mind being a data point; while I can, I’ll continue to participate in research.

Solving and Stopping Voices

I have seen some videos online that try to show what it’s like to hear voices. Often, the videos show someone doing something while recorded voices shout out words. In my experience, the voices sounded just like from real people and not just a recording. They sounded three dimensional. They were not random phrases but specific to what I was doing. Other than not having a physical presence, they almost made sense. That was why they were so confusing!

When I first heard Joe, my first voice person, I imagined a young man talking into a microphone in a room somewhere. Of course, I did not think that my brain made him up. I thought he was real somehow. Somehow I could hear him through some impressive technology that I did not know about. He was a soft-spoken, friendly, and not terribly talkative person. Mostly he made comments about what I did. He was not particularly funny or smart. I could not tell if he was logical because we did not have enough “conversations” that would make me think that. I could not get him to tell me anything about himself even though I asked him many questions. We took turns “talking” and never talked over each other. He never yelled or whispered.

Once in awhile, he would tell me what to do. For example, he told me once to go to Starbuck and talk to a stranger. We had very harmless “interactions.” At first, I tried to figure out where his voice was coming from. I would look around to see if I could find a speaker or some sort. Failing that, I tried to reason with him. If I could figure out what he wanted then I might be able to get rid of him or get him to show up.”Why are you doing this to me?” “Did someone hire you to follow me?” I was not successful. Sometimes I felt romantic. Sometimes, I thought he was helping me to be happy, somehow magically. But at the end, I kept repeatedly facing the reality of Joe never showing up when I kept asking him to.

After Joe, after a while I had another episode for a few weeks. I did not just hear back from him, but from many different voices. This time they were all voices of people I knew, my friends and family. My voice friends and family took me right back into a world of my own alone in my apartment. My voice friends and family led me in personal conversations and fun games. I tried to stay quiet and fight against them, but I often was consumed and swallowed by them completely.

When I first heard my family and friends, I felt disbelief. These could not have been my family and friends. Could they? They would not talk to me this way. They would not put me through this. But my disbelief did not stop them. Different circles of friends talked to me on different days.

I made rules for myself on how I should behave with these voice friends and family: don’t do anything they told me to do and don’t talk back to them using my mouth. Doing those things, I thought, would mean that I was okay. Okay for what, I was not sure. It seemed to make sense then. As much as I tried to use logic to conquer the voices, I still could not reason my way out of them. I did not seem to “talk” or “think” better this time either.

I tried to understand how the voices worked. This also seemed to make sense at the time.

Normally, when someone talked, I heard the words in my head. My hearing had always been normal. I could also talk to myself silently in my head. In these situations, I could also hear voices talking to me in my head without seeing someone. They sounded real to me. Other than talking voices, I also heard sounds that sounded like talking from raindrops, birds, etc. I could tell all these different kinds of talking apart.

As I said, when I was alone with the voices, I tried to understand them. I moved around in my apartment and realized that the voices did not move with me. If I turned my head to look out of the window, the voices I “heard” did not move from where they were before, just liked how it should if there were real people in the room. When I walked out of my apartment, the talking sounds stayed in my living room in the far end of the hallway. I also used earplugs and that helped. They could block off the voices when I tried to fall asleep. Similarly, I also could block out voices by listening to music using earphones. These made me felt that I had proved the voices were real somehow.

When I was out of the house and among people, the voices were less prominent or nonexistent. That made it easier to forget about them when I was out with friends, and therefore allowing me to live in two different parallel worlds.

Even though I sort of figured out ways to block out of the voices, I could not do it for long. I could not wear earplugs and listen to music all day. I ended up listening to the voices most of the time. I gave them my attention. All that did not made me understand them more.

What I wanted to do the most was to stop them. I never figured out a way to stop the voices. I still was not thinking about being a schizophrenic. I never thought that my brain was the cause of them.

I regretted how I let myself got sick the first time I met Joe. Every time after that, I thought they were my second chances to do over and be smarter about it.  The voices were a problem that I could not solve on my own no matter how hard I tried.

A wise friend told me a few years later, “Mindy, this is not something you can reason your way out of!”  That hit me. I repeated that in my mind many times. Then, after all these years, I gave out a heavy sigh. “I can’t solve this!” Finally, I stopped asking myself what I could do when I heard “them.”

 

Locked Up

I was deep asleep. I vaguely felt someone put a needle into my left arm. The needle did not wake me completely. I felt hands putting a bandage where the needle was. My mind felt very heavy. I fell back to sleep. It happened again. I heard a man next to me talk about drawing blood. This time I said no with my eyes closed. My right hand moved to cover my left arm. He did not draw any more blood from me. My mind still felt heavy. I fell back to sleep again. Someone came again. I heard a cart rolling towards me. Something was taped on my head and body. Someone was measuring my heartbeat, I thought. Even with all that, I did not wake up. I fell back to sleep again. I did not know how long I slept.

As soon as I woke up, I jumped out of bed. I looked around. I did not recognize the room I
was in. There were two other twin beds. There were three wooden desks and chairs next to them. There was no other furniture. The wall was bare. No one else was there.

I saw that there were two brown paper bags on the desk next to my bed. In them, I found my cloth and handbag. I looked at myself. I was wearing a set of brown cotton shirt and pants. They were not mine. I picked up my handbag and checked my things. Was everything there? No! My iPhone was gone. My wallet was gone, but my house keys were still there. There was a small plastic cup filled with coins that was not mine. My heart skipped a beat. Something was terribly wrong. I quickly put on my dark brown sweater, blue jeans, light brown wool coat, and white scarf. I grabbed my bag. I walked out of the room. “I am leaving!”I mumbled to myself.

I talked to the first person I met in the hallway.
“I want to leave,” I said to the stranger.
“You can’t,” he said.
“Look there is a urine cup in my bag. My wallet and phone are missing. Why is there a urine cup with coins in my bag?” I said, louder than I normally spoke. I wanted answers.
“I don’t know,” he said sympathetically, calm, and matter-of- fact.
I looked at him; he looked at me. Silence filled the next few seconds. I walked away from
him.

I did not want to get upset at a stranger. He did not do anything bad to me. I walked back to the room, still upset. I looked out the window to see if I could tell where I was. I saw a garden with many trees, and snow on the ground. I could tell that I was not in Boston anymore. I also noticed that the windows were sealed and locked with metal bars. A piece of paper on the desk mentioned Belmont.

“Okay, Belmont.” I thought. “As long as I have my keys, I can still go home. I can walk home to Back Bay from Belmont. I have done that before for the three-day breast cancer walk. It might take me all day but I can do it!“

Belmont was about eight miles from Boston. Without any money or a phone, I could still walk home. I have my keys and my legs. I could depend on myself. I sneaked out of the room quietly again. This time, I headed towards the longer side of the hallway and looked for an exit door. I did not see anything obvious. I felt like I was doing something wrong, trying to sneak out. I stopped. After a few more minutes, I felt calmer. I went back to the room, took off my jacket, put down my handbag, and sat down in the bed I was in before.

I now knew for sure that I was locked up. I did not need to talk to anyone to understand that. The last thing I remembered was when I was at the ER at MGH. After evaluating me, the doctor at the ER must have admitted me to this place, McLean Hospital, overnight. I found the hospital name from the piece of paper on the desk. Was it the night before? Or longer? At the age of thirty-seven, I was now confined in the ABII unit at the McLean hospital in Belmont, Massachusetts for the first time in my life.

How did I get here? What happened? What did I do?

I was a Cornell-educated woman who had a steady job, had lived independently for all my adult life, had traveled the world, and had loving friends and family. I tried to retrace my steps. I went over it again and again in my head. How the hell did I get here?

Know the Signs

At the beginning, I did not know what was happening to me. My stable and secure life had changed all of sudden: I lost my job of five years; I broke up with my boyfriend of six years who I was living with.

I was very much alone all of a sudden. Chris and our couple friends were not around much anymore with everyone making similar life change events, getting married, going back to school, and starting new jobs. I was not thinking about making new friends. I kept to my room, gym, and work, my Bermuda triangle in East Cambridge, MA. I did not feel lonely. Quite the opposite. I felt determined. I wanted to control my life and give it order and purpose. I felt that I had so much to learn. Instead of eating out and hanging out with friends, I needed to take advantage of every free minute I had to be productive.

This mental rigidity meant that I was not expecting any new changes or surprises in my life. In the past, when facing a new stage in my life, I was always ready to draw on the connections with both old and new friends. However, at this time, when I was not at work, I stayed alone, even isolated. Without realizing it, I started living in a world of just me.

When I started working at my new job, I was in a very happy mood. I would listen to music and, not intentionally, sing out loud in my cubicle at work. I would chat with people in my group and laughed so loud that people down the hall could hear me. That was the me without any cover-up. I was being me, from the inside out and not considering that I was surrounded by strangers I did not know. I believe, this was the start of a sequence of small and large events that altered and stressed my brain in a new way that it had not experienced before. Perhaps, being inside out made me more vulnerable. 

Then the emotional spikes came. Then the uncharacteristic timidness appeared. When I talked to strangers, I had trouble telling them what my name was. I became deadly quiet in social settings. Then I heard my first voice. Still then, I did not worry about myself. It took about three months or so for me to finally had a mental breakdown and called for help.

Looking back, given my isolated and vulnerable mental state, I should have been more careful and more aware of my mental health. Here are some of the lessons I learned from my experience:

  1. Understand the genetic risk. My mother triggered her schizophrenia also late in her life, in her thirties. Given that, I should have read up more about this brain condition and keep in mind of the risk as my life changed.  
  2. Be careful of major shift in personality. I became single-minded and hypersensitive to any surprises. I became emotionally much more vulnerable than usual.
  3. Be mindful of major environmental change. Everything about my life changed within the same six months. All of a sudden, I had to face new challenges and people all around me.
  4. Talk to a health professional. If I was aware of the signs, I should have talk to someone who could help me!  

If I was able to spot early signs of problems and seek professional help, perhaps, I would not trigger and go through a full on episode of psychosis with confused thinking and auditory hallucination. Learn about these brain conditions. Early education and detection may save one from triggering a lifelong brain condition.   

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Writer’s Note: This post was also submitted and published on NAMI.org on May 11, 2018. 

Can I Reach for More?

I was sitting in front of a young researcher in a small unimpressive room in McLean hospital. I volunteered to be there, to spend three hours being part of her research. I had been there before as a research subject. This time, I played computer games. I did memory tests. I filled out self assessments. At the end, she interviewed me. When I said that I lived on my own, she sounded surprised. When I said that I own my apartment, she asked me if anyone had helped me. I smiled and said no. When I told her that I had always worked full-time, she sounded impressed. “You are doing really well!” I thanked her. When I meet people who know me first as a schizophrenic, I always did so much better than expected.

I had my first psychosis at age of thirty. First, I became hypersensitive to my surroundings, had confused thoughts, then heard my first voice. The “young man” first talked to me for 10 minutes. Then by the end of my full psychosis, he was speaking to me nonstop. The constant talking and not being able to sleep finally broke me. Thoughts were racing; I could not talk. I called a friend in the middle of the night and he took me to see a doctor. Luckily for me, I was prescribed Zyprexa, which was able to suppress my voices and hypersensitivity right away. After missing a few days, I went right back to work.

Life appeared to be back to normal. The medication, however, could not erase the experience that I had and remembered in pieces. When I was alone at home, not at work nor with friends, I would struggle in private. I tried to remember. I asked myself, again and again, what happened. I wanted to find out the truth. I did hear from someone. I did notice weirdness on the street. I knew what I heard and felt. My experience was very real to me. I could not forget.

For the next six years, I lived in two different worlds: normal and private. In my normal life, I was working hard, living independently, traveling the world, and surrounded by friends and family. In my private world, I tried to trace my steps leading up to the day that I could not talk anymore. I did not talk to anyone about what was deeply in my mind. I was very alone in this private mental world.

At the end of the six years, I had a second major psychosis and ended up in McLean. For the first time, at the inpatient unit, someone was interested in talking to me about my private world. A team of doctors and nurses talked to me every morning. They probed and listened. The doctors gave subtle and gentle advices for two weeks. I finally made the connection that I was the only person who heard what I heard. To make a further connection, that my brain created that “young man” and many other experiences. Making a even further leap, the little white pill could alter my brain!

Looking back at my journey, I am very grateful that I am where I am today. By the time I was thirty, I was already a grown-up with known personality and stable life habits. Being treated at McLean was the turning point for me to become aware of what I really have. I was able to fully merge my two worlds into one. Now I can speak clearly with my friends and family about schizophrenia. I look for ways to help, such as participating in research.

After the research was done at McLean, on my way home, I felt the same conflicted feelings that I had before. Even though I was able to merge my two worlds, I am not sure if the world is. I am thankful for the life that I have as a schizophrenic. At the same time, I want to work towards living a even fuller life. I don’t want to be complacent; I don’t want schizophrenia to be a crutch. I work hard and want to be better at what I do. I am diligent about paying down my mortgage and saving for raining days and retirement. I treasure and keep up my relationships with my friends.  I hope to stay healthy and hope to practice yoga and run more often. I want to see Africa, South East Asia, and many other interesting places in the world. Most of all, I want to make the world a little bit better, even as a schizophrenic.

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Writer’s Note: This was submitted to and passed by the NYTimes. My first try and rejection from NYT. If you are a NYT reader and have suggestions for my next try, please comment below! Looking forward to many more rejections that lead to successes! 

My First Voice

Update from April 16, 2018: I submitted an updated version of this post to NAMI and they posted on the NAMI blog. 

No one ever asked me what I had heard from my voices. I think it’s a tough topic to talk about. If you have never heard of your own voices, you might not know what to say. Voices are not normal. Regardless, I remember them. Some voices are more memorable than others, just like real people.

On a sunny day, I heard “him” for the first time. Later on, I would name him Joe who reminded me of my crush at the time. I woke up in my room and was getting dressed. All of a sudden, I heard a young man talking. I was not sure if he was talking to me. I thought, “Let me walk outside of the house to see if I can still hear him.” I stepped out of the front door and there was silence for about 5 seconds.

Then, he said, clearly. “Can you hear me?” I stood in front of the door, locked the door and start walking towards work. “Yes.” I said quietly and smiled. “Don’t smile. You are going to look silly if you walk on the street, talk to yourself and smile on your own.” Okay. I thought in response. I transitioned my communication to Joe from speaking out loud to in my mind only. That did not bother me. Actually, I did not notice the transition. “You need to ask someone for help,” he said. I still can’t believe that my first voice warmed me about the situation I was in. “Jennifer?” I thought again. “No, it has to be a single guy.” I thought, “Are you joking? Is this some sort of joke?” I don’t remember how the conversation ended. The voice disappeared when I reached work.

I had a completely reasonable “conversation” with Joe. We did not talk over each other. No one yelled. He did not make me upset. He did not give me commends to hurt or kill myself. Just like people, there are all kinds of voices.

My psychiatrist recommended Hearing Voices, A Common Human Experience to me when I asked him to help me learn more about my condition. The book covers many different perspectives on hearing voices, from mental illness to spirituality, from distant past to now. It is an insightful read.

Every time I think about my schizophrenic experience, I am amazed at what my brain can do, even when it’s broken. Perhaps, in the future, we would find out that it’s not really broken, but just behaving in a way that we don’t quite understand right now.

Human brain is incredible!