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.

Remember This On A Rainy Day

To me, I say to remember this on a rainy day.

Singleness. I fully embrace it. During weekends, I can get up at 8am or 11am. It takes me 10 minutes to get out of the house and I don’t have to wait or hurry. I just use the bathroom. I just eat, either out of my fridge or at a restaurant, at 4pm or 7pm. I get home when I get home. Everything at home is always where I remember it to be. I don’t have a TV or car and that’s okay by me. My home is simple and not cluttered which is just the way I like it. I have lots of time to work on interesting problems, read and sip tea, write and sip wine, take walks, travel, and hang out with friends! I am not responsible for little people 24/7 and are always amazed by my friends who are parents at how much effort and energy they have for their kiddos.

I can dance in the middle of my living room. I can sing along with my Spotify playlist. I can wear PJ all day. All not to be embarrassed. My home is my safe and private space, and more than enough space just for me.  I have absolute freedom and independent love in life. For that, I am thankful and grateful.

Dating is a great way to meet new people. Everyone is hopefully and scared at the same time. We all have a heart made of glass hoping to hand it to someone who won’t accidentally drop it on the floor. It’s truly an adventure.

Here is what I would like to say to the me with a man. Remember how full life was when I was single. I took advantage of singleness and did whatever I wanted. Even though I had not met you, I had a wonderful life surrounded by friends and family. I was taking steps everyday to learn and become who I am as a person. Now I am with you. I am hoping to learn about the life of two, love of two, and maybe with kiddos too.

Singleness and couple-ness are just two different journeys, each has its good and learnings. Don’t forget the life lessons from both journeys. Remember to always enjoy life no matter what.

Today’s top of mind.

Dating Books

Dating men can be like “dating” books!

Don’t judge a book by its cover? Well, I do. Firs impression matters. Are you glossy or matte? Are you a paperback or a hardcover? With a dust cover? Is it black-and-white or color? What is the title of the book? Do I want to open the book after seeing the cover?

Let’s say the cover passes the gut check. Awesome. I am now opening the book and excited to read the first sentence of the first chapter on the first page. The most common first message I received on online dating websites is “hi.” Imagine that in a book! The first sentence should probably be more than one word but not taking up the whole page either. Underwhelming and overwhelming are both undesirable. There is no rule to say what is a absolutely good first sentence. It could be a split-second decision or a longer and slower read. If what is written intrigues me, then I will probably decide to keep reading.

After reading a few more pages, I can pretty quickly know if there is chemistry between me and the book. Sometime, a book is easy to read, or interesting, or challenging, or impressive. Fiction and non-fiction are definitely two different reading experiences. And I know for sure that I don’t like short stories. I have tried many times and the outcome is the same no matter how great the book is. The poor book is not being read gathering dust in a corner and I hit myself in the head for buying it (again!)

There are times I just can’t get into a book even with a promising start. For whatever reason, there is no connection. I am reading the words but I am not getting anything out of it. In that case, I find that it’s good to put the book down and say I am going to pass on this one. I am in my forties. There is really no point reading every single book cover to cover. Who has that kind of time at my age?

For the times that I am unsure, I sometimes give it a longer try and read a few more pages or chapters. I either get pleasantly surprised or stop reading. I find that I am mostly right listening to my gut. But taking risk and being open is part of the adventure.

Spending time reading a book is a precious activity. To me, it’s quality time for myself. I am wiling to put everything aside and invest that time in a book. When I am in the middle of a good book, I am walking on air. Some book requires pacing and other I lose sleep over reading. Some stories are memorable!

I am always looking for the opportunity to be inspired, to learn and to see something new in this world.  Cozy up with a cup of tea and a good book on a Saturday night is amazing. Times goes by so fast when it’s good! Even though I have my share of unmatched books, I am for sure going to keep dating books!

Okay, I know men is so much more than books. But can you kind of go along with this for fun with a book nerd like me?!? <grin> I am also limiting my imagination to the first few dates before being exclusive. After the warming up period requires a whole different post! Lastly, the same holds true for me as well. I think about how I hold up as a book!

May everyone always enjoy your book happily! If you like reading.

 

A Dedication

He is as sweet as they come, she believes.

They are young, both with wide-open eyes, arms, and hearts. The sky is always blue; classes are always good for naps. He loves to show off his sports car; she loves to watch him showing it off. The meeting place can not be more perfect. They are partners in classes, constantly challenging each other. They discuss and debate about life and death, purpose and principle, happiness and goals. They spend their first summer roaming gorges, hiking forests, playing in the parks, and hanging out in a little town in upstate New York. He knows where to go: taking her to the quaint restaurants, the one-and-only lame mall in the neighborhood, and as many movies as the cinema plays.

He is as much of a gentleman as any college boy may strive to be. She knows that she has the eyes for goodness.

She thinks he is special, this incredible blend of east and west. He dislikes his past made of boarding school and various places in the world. She reminds him of how the journeys in the past built his character, a fine one that is. He looks for his root; she sees his core as solid as any rooted person may have. He treats her like a lady; she falls for that always.

He is ambitious to do something great. So is she.

All college years end and all collage kids grow up. He begins a new life chapter in the corporate world. In a pretty happening city, he makes new friends, keeps fit, and works his butt off. His higher education seems to have paid off. She starts her new life a few hundred days later, following his lead pretty closely. With a bit of luck, they find each other again in the same city and decide that it is a great thing to keep it up.

He is loyal, earnest, and studious. She is no less.

When solving a problems, he puts in his best. He becomes credible to his teams. She admires him and works harder. They are both career-minded people who determine to be proud of their work. They are surrounded with like-minded people and they keep moving upward.

He cares and she is touched.

She is deeply moved at how he takes care of her. The evidence is especially visible when she is sick. He always knows what to do, what drug to get, what food to buy, where to go, and who to call. He touches her many times with that tenderness. She is thankful.

He is a Peter Pan. Secretly she is too.

Their favorite movies are the Disney ones. He owns almost every one of them. (Let’s keep that under the covers!) He also catches all the actions and sci-fi’s; she loves the sappy romantic comedies. Regardless, they always watch together. A bit unusual, they fight to let the other to order food at the restaurant. They are both flexible and considerate in nature. Perhaps a bit too considerate …

If in this day and age the concept of marriage does not exist, they would be the perfect couple. They hardly fight. He makes jokes; she can’t stay mad at him. They enjoy each other’s company; they also allow for personal spaces. She likes to hang with her girlfriends; he picks up the boys and does whatever until the girls return. They are comfortable with each other. They are open with each other. They take care of each other in their own ways. They seem happy.

He is responsible and she is mature.

Things happen and everything is a blur. Basically, he knows what he wants and she knows what she does not want. They are inseparable. Their friends are inseparable with the this combo too. But perhaps a break is good for them even it is not good for anyone else. Their circle friends are sad. The boy and the girl remain civil; they become good friends.

He continues to search for what’s important in life. She does exactly that too.

At this turning point in their lives, they are both searching for the meaning in life. She believes that one can’t love another without defining oneself first. He looks to religion for answers. She wants to fill more philosophies in her head. He wants to know God’s will and finds the plan that’s for him.  She travels to see the world to explore possibilities. She is reshuffling her self; as is he.

He needs most a friend; she needs most her solitude.

She feels selfish to abandon a dear friend. She realizes that she is not capable of being a friend. Not right now. At a time of healing and soul searching, she must take care of herself first. He is the reason for healing and solitude. He is also the one who needs a friend the most.  She is torn between her affection for him and her own needs. She fails at the balancing act.

“Why” he asks. She can only smile.

How can she help him understand? You see, these two handle healing in the exactly opposite way.

She is constantly aware of her intrusion to the external world. She prefers not to talk to anyone when she is unhappy. She prefers never to think ill of anyone and be morally good. When she is confused, upset, or sad, she wants to fix it on her own. Perhaps she is just an introvert at heart. She is just built that way.

He is constantly looking for chances to interact with the external world. He prefers not to be unhappy and never think ill of anyone. He prefers to be a morally good person. When he is confused, upset, or sad, he wants to fix it. He helps his friends and that makes him happy. He stops being sad by just getting over it. He talks about his problems and solves them with his friends. He is just made that way.

She still sleeps the best – feels the safest – when he is around.

She does not want to be upset any more because of him. She feels that she lives in the past, does not want to feel that way, and wants the current chapter closed. She is aware that once again she is making a decision that will affect the both of them. She is very sad.

She needs some space and time for herself.

Long after their break up, she finally cries about that for the first time. Her body is reacting too slowly; the tears quietly fall from the corner of her eyes. Or maybe the brain is just faster than the heart. The sadness lingers not more than a couple of minutes. She hates being wimpy. Here her eyes are quietly wetting again.

No offense. She needs to be ok. It will take her so many years to “get over” it. She does not have the strength to be strong anymore. She does not have any answer, explanation, or theory anymore. She needs to be left alone for a while. She needs to take care of herself. Then she can come back and be his best friend again. Then she may be a friend for anyone. She needs to feel that she is ready…

This chapter is as beautiful as it comes between a boy and a girl. He is as sweet as they come, she still believes. No matter what happens, this boy and this girl will always know that they had loved each other dearly with all their hearts.

That’s a brainless predication and a fine closing note.

 

Great Seafood Restaurants in Boston

My personal recent favorites are, from left to right, Pammy’s, Waypoint, and Select Oyster Bar. First, the food was excellent. I have been to these places multiple times so they are not a one-meal wonder. Second, the places are cozy with character. I enjoyed being there. For the man who was on a blind date with me and wonders where we should meet next, well, here is a big hint! For other men out there looking for a nice post-first-date spot, check these out and don’t forget to make a reservation for your special someone!

More about these dishes that I love:

  1. Citrus Grilled Prawns, nori fattoush, herb salad, pickled pepper aioli · $17
  2. Spanish Octopus, roasted tomatillo, chimichurri, blistered snap peas, cilantro · $21

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.”