At some point, Joe said to me, “One honk means right. Two honks mean left.” He was referring to the honking of cars. I didn’t quite remember what he said exactly and ended up with both what he said and what my mind made up, which was: one honk means yes, and two honks mean no. One day I was in my room. A car drove by the house and honked twice. The sound of honking jumped out at me loud and clear! I immediately thought the car was signaling, “No!” Is that an objection? What I was thinking must not have been right. I heard another honk following my reaction. In my head, I reacted to the one honk and understood it be to be, “Yes!” Whoa, I guess that confirms it. I didn’t look out the window to check who was driving by or what kind of cars they were. I just listened and made sense of the different honking sounds. Honking from that point on became a signal I understood automatically. If a honking lined up with my thoughts, then it provided input.
After I heard my first voice, Joe, as I called “him” later, started speaking to me more and more. He spoke to me when I was alone in my room. He only showed up when I was alone. His voice continued to be soft, calm, and gentle. He never yelled at me or talked over me. With the exception of our first interaction, I never “talked’ to Joe using my mouth. I spoke words to him in my head silently. If there was anyone else around, they would see me as being quiet, as not having a conversation with anyone. But I was having conversations with Joe. My mind focused completely on his voice when he talked. My eyes took a slight backseat to my ears as I tried to continue to go about doing things while Joe commented on what I was doing. He always enunciated his words. I had no trouble understanding him. When I turned on the radio on my bookshelf, he said, “Good!” When I opened a book to start reading, he said, “Let’s think about this.” During the weekends, the talking would go on the whole time I was alone in my room.
Soon after I was discharged from McLean in 2011, I submitted a request to get a copy of my medical records. A huge pile of paper was mailed to me. When I first read them, I was overwhelmed with the “professional,” “structural,” and “brief” tone they have. I was also sometimes surprised by what was documented. Recently, I talked to a research doctor and mentioned that I had read my own medical records. She did not expect that and said, “Reading one’s own medical records is not easy. They are usually technical. And rushed. Often with mistakes.” I agreed. Very often, a lot has to be done in a very short time.
However, these medical records shaded some important light on how I was perceived and expected to behave when I first came in contact with the caregivers at McLean, people who knew about mental illness but did not know me personally. That is invaluable.
Identification Data and Chief complaint: This is a 37-year-old, Asian-American female with a history of schizophrenia, who presents for her first McLean, and likely her first lifetime hospitalization for increasing psychotic symptoms in the context of stopping her Zyprexa.
History of Present Illness: Please note that, on arrival to the CEC, the patient was very sedated and unable to participate in the interview in a meaningful way. She nodded “no” to questions about suicidality and drug allergies but was unable to really give much information beyond that overnight. (Mindy’s note: This was in the middle of the night after I went to the ER and was moved to another location that I don’t remember at all.) The remainder of this note will come from information obtained in the APS. This is a 37-year-old, Asian-American female with a history of schizophrenia with no previous hospitalizations, and no significant past medical history, who was brought in by EMS after the patient’s friend called 911 because the patient had been worsening in terms of her schizophrenia. The patient has been off of her Zyprexa, which was at a dose of 2.5 mg daily. However, her symptoms worsened in the past few weeks. Per her friend and the patient, she recently quit her job because she “wasn’t performing well” and has been spending the past week at home alone with increased auditory hallucinations hearing six or seven different voices. Per her cousin, the patient has been afraid of being attacked and was reusing to allow her parents to visit. (Mindy’s note: this is not accurate. My parents does not usually come and visit me. They live far away. It was strange that they wanted to drive 5 hours on a weekday without advance notice to visit me! Their visit is the unusual part, if you knew us.) Also, has been worried about being stalked. The patient’s parents report concern about the patient being at risk for suicidality given her degree of confusion and distress. (Mindy’s note: I was shocked when I saw this! Shocked. Obviously, this was from someone who did not know me well.) One month ago, the patient was brought to the Emergency Department status post taking sleeping pills, which she reports was not an overdose, but the patient left from the Emergency Room without being hospitalized. The patient denied suicidal or homicidal ideation in the APS but reports “perhaps” that she has had command auditory hallucinations of suicide. (Mindy’s note: Again. Shocked and not sure who said this!) She denies visual hallucinations or ideas of reference. She reports sometimes feeling stalked and sometimes feeling like she can read people’s thoughts, “But you can’t confirm that sort of things.” Collateral from the patient’s close friend and coworker report that this coworker has been in touch with the patient’s family, and they believe that she has been off of her medication for the past six months. One month ago, her condition worsened, and she reportedly became confused and began calling people in the middle of the night (Mindy’s note: I called two people. One at midnight one at 2am.) saying she was hearing voices and being talked, and around that time she took the sleeping pills. They tried to get her to the ED, but she ended up running away. (Mindy’s note: I did not “run” away. I walked away on my free will after speaking to someone who wanted to me follow her to the ED. I disagreed with her suggestion.) The coworker feels that the patient is not safe at home, and the friend called 911 today because the patient did not recognize her when she saw her. (Mindy’s note: I am pretty sure this was referring to a phone call…I did not see any friend that day.)
Mental status examination on admission: The patient is a thin, Asian-American woman in hospital attire. She is sedated and minimally responsive to verbal stimuli. She will nod “yes” or “no” to safety questions, but she refuses to answer further. No speech is observed. Her mood, thought process, and thought content are unable to be assessed. Thought content likely is significant for an underlying psychotic process, and this interviewer questions if some of what appear to be sedation are underlying psychotic symptoms. Insight and judgement is limited by sedation at this time. Attention, orientation, and memory were unable to be assessed secondary to the patient’s sedation.
Inventory of assets: The patient is reported to be bright and articulate with good social and family support.
Formulation: This is a 37-year-old female with a history of schizophrenia currently decompensated with increased psychotic symptoms in the setting of stopping Zyprexa with hopes to conceive a child. Her family and friends are concerned about her safety and recent erratic behavior and brought her to medical attention. In the APS, she was given 5mg of oral Zyprexa and is currently sedated in the CEC and unable to participate in the interview in a meaningful way. This lack of participation may also be representative of her underlying psychotic process. She requires an inpatient level of care for safety, stabilization, medication re-initiation and management, diagnostic clarification, and aftercare planning.
Initial treatment plan: To admit the patient to AB2. Estimated length of stay of seven to 10 days. We will put her on 15-minute checks while restricted. Initial short-term goals are safety and stabilization. Recommended interventions include individual case management, group therapy, milieu therapy, pharmacotherapy, family meeting, medication management, and psychosocial interventions. (Mindy’s note: This is amazing! A plan of action!)
Note: Some part of the admission note report has been emitted here.
As someone had a broken brain, I was not consulted. They couldn’t; I was sedated. But they had to do something. The had to help me. My life and health status was pieced together by friends some knew me more than others. Mixed in this report includes some facts, some assumptions, and some of their personal worries projected onto my situation. However, very often, records like this overrides voices from people like me. It was my (lack of) voice against everyone who loved me.
Reading this report, I also gained a tremendous respect for the attendings at the ER, CEC (Clinical Evaluation Center at McLean), and APS (Acute Psychiatry Service at MGH). Overnight, they had an idea of who I was. They made the best decision about my life by digging up as much information as they could. They do this every day! They help people.
I am lucky in that I gained my own voice back. As the caregivers looked after me for two weeks, they formed first-hand perspectives about me. I think they got a better picture of me. Not everyone is so lucky and gets a chance to express who they truly are. Sometimes, medical records get passed on and on.
Let us all be mindful of what we project on others, say or assume about them. Words matter.
A few days ago, I discovered the free educational program by Massachusetts General Hospital Department of Psychiatry and spent today at Schizophrenia Education Day: Progress in Schizophrenia – New Insights into Brain Development, Drug Use and Treatment. I walked away with so many new thoughts.
A study ran by King’s College London and University College London was using digitally generated avatars for schizophrenic patients to confront their hallucinatory voices.
My first voice was a young man. In my head, I had an idea of what he might look like and could probably pick out recordings of a voice that matched his the closest. However, creating him, my Joe, as I called him later, feels a bit scary. (Though now a Japanese man can get a digital girlfriend and in China there is a digital anchor!) These folks are right. I had a “personal relationship” with Joe. This would either enhances or damages that. Would this make him feel more real? Would this further mess with my sense of reality? By making him more real, do we hope to empower patients and raise us from being the one that is suppressed to dominant? Will this succeed in putting more control back to patients’ chaotic and confusing lives?
The rest of my voices – there were many of them – were all of my friends and families. I did not need avatars in this case. When I see them in real life, I did wonder about if they were really speaking to me in this abnormal way and why they would do that.
I am lucky that my voices were not aggressive or violent and that I am mostly-voice-free with medication. For folks whose treatments do not remove harmful auditory verbal hallucinations, this is an innovative way to fight the battle. I hope to hear more about this.
“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.
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!
“This is a very important problem, with some patients gaining sixty to one hundred pounds. Its mechanism is unknown but may involve increased appetite and/or effects on leptin, a hormone important for fat metabolism. Most disturbing are data suggesting that weight gain and the efficacy of the drug may be related, that is, you may have a choice of being fat and non-psychotic or thin and psychotic.” -Torrey, E. Fuller. Surviving Schizophrenia. 1983. Pg 217.
I am a very lucky person who only fully understood and experienced “side effect” after I turned thirty. I am both humbled by and mindful of what modern medication can do.
One of the major adverse side effects of second generation antipsychotic Olanzapine (brand name: Zyprexa) is weight gain. When I started taking Zyprexa for schizophrenia, no one told me about the possible problem of gaining weight. My body adopted to the medication the same way most people did. My body changed how it reacted to food.
The first thing that changed was how hungry I felt when I was eating. I never felt craving before this. But now I did. Having growing up never had to resist food and always had been a stick, I did what I always did. I ate whenever I was hungry. Now, my stomach felt like an endless hole. No matter how much food I put into it during a meal, I could always eat more. I did not feel food the same way. I loved trying new restaurants with friends. I kept eating and gaining weight. I gained 30 plus pounds and went up from size 0/2 to 8/10 in a few months. I finally was worried. Something changed. But it was not me, was it?
During my thirties, there was a few times when I was off my medication. As soon as I was off Zyprexa, my weight dropped. I would lose 15 to 20 pounds in a couple of weeks. I would no longer feel so hungry. I realized and validated that my medication was changing how my body dealt with food. Taking medication to cure a problem traded another (relatively minor, true that is!) problem.
As much as I loved eating, I had to start watching how and what I ate. The side effect was now a reality and I had to learn a new eating habit even though I felt like my old self, that I had not changed. But my life did change because of schizophrenia and I was no longer a skinny Asian stick who did not need to think about the action of eating. Ironically, in the last decade, I spent more time managing my weight than schizophrenic symptoms. (Knock on wood, my schizophrenia is controlled by Zyprexa and I am very thankful for that!) My cousin gave me a wireless scale as a gift in 2012 and I have been tracking my weight daily since then. I learned that if I ate three “normal” meals, normal as in pre-schizophrenia days, I would gain half of a pound a day. It never failed to do that. So I had and have to consistently work on this daily!
On the bright side, it seems that now my stomach has gained back some sensation in the last couple of years and I do feel a bit more when I eat. Perhaps, my body is readjusting to the medication and bouncing back a bit after a decade!
For the most part, I am still very much a foodie. And to quote my dad, “you are lucky you can eat!” Indeed, I am!
Managing side effects from medications is a serious focus for anyone who is managing a chronical disease and taking medication. We know that life is a balancing act and full of learnings and tradeoffs. It’s not easy but we have to keep at it.
Behind every person and body, there may be a story! We can all be more understanding and not judge someone too quickly.
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.