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.
