Schizophrenia and Connection

What do you see when you think of someone living with schizophrenia? Probably a shadowy person hunched over themselves, hair unkempt, talking to invisible demons. How accurate is that stigmatized version of this peculiar illness? I would say, as someone living with schizophrenia and has lived closely with other folks living with schizophrenia, that this is not accurate at all. On the unit I lived on for nearly three years, folks wandered the halls, lied down in their hospital beds staring at the ceiling, and sometimes sat in the dining room, chatting to themselves, or sitting quietly as stone statue. I spent most of my time in bed, watching strange shapes and critters climbing my walls. Because I was on 1:1 supervision, I was always with someone. These people were MHWs (mental health workers), trained to take care of elderly psychiatric patients, many with physical ailments to boot. I was on the medical/psychiatric unit because I had a feeding tube for most of the time I was hospitalized. Most of the MHWs made conversation. Sometimes I liked it, and enjoyed the kind, sometimes interesting conversation. Other times I was too tired or too drugged or too psychotic to follow the arc of conversation, and I would just drift off. But overall, I appreciated them and their words more than I was able to articulate. But it wasn’t the words, it wasn’t the therapy. It was the relationship. It was the connection.

There is a very unfortunate notion about schizophrenia-spectrum illnesses that therapy is futile, a waste of time, even harmful. This could be because clinicians are looking at a very narrow definition of what constitutes as therapy. I agree to a certain extent. At my worst I didn’t really give a damn about Dialectical Behavioral Therapy with its Dear Mans and TIP skills. It just didn’t make sense, and I didn’t have the capacity to follow a train of thought from beginning to end, and I was convinced the DBT counselor at one of the hospitals I was at (for far too long) was trying to read my mind. not exactly a recipe for theraputic success.

Living with schizophrenia can feel like being stranded on an island, except that island is you. I think many people, clinicians included, are afraid to engage folks living with a schizophrenia diagnosis. We are not always polite, or reasonable, sometimes we hurt ourselves and others, sometimes we can’t even move we are so locked into ourselves and our illness. That doesn’t mean they should not try. I remember being hospitalized in a hospital in Anchorage, Alaska, where I had been receiving ECT treatments twice a week for months, as an outpatient. One day I went in for my usual procedure and was deemed a threat to myself. I was suicidal, hearing the voice of the devil himself. I was admitted to the inpatient psychiatric unit. I don’t remember much about the unit, except that I was in bed most of the time.

Happy Place

What even is a Happy Place? Is it a yoga retreat on a pearly white beach next to turquoise water? I’d like to think that some people would love that sort of spot, but it is only one version. Some peoples’ Happy Place might be the classroom, the office, the garden, their room. Mine? The mountains. Wherever you find yourself peaceful and present, might be your Happy Place. You might think this is absolutely ridiculous and think that Happy Places are a thing for people with too much time on their hands. I say, fair enough. But I’m going to try to explain something that occurred to me not too long ago. I didn’t have a Happy Place in terms of an ulterior physical location. I was my own Happy Place. I realized that no matter where I am geographically, I have my own, private space within myself that I can retreat to when I feel overwhelmed, or tired, or bored. This is not to be confused with dissociation related to PTSD or C-PTSD. It is more of a meditative space.

Many years ago I was on bedrest on an inpatient eating disorders unit. I spent my days staring at the walls and ceiling, watching hallucinations wander through the room, up the walls and across the ceiling. If I hadn’t lost it already, being confined to the hospital bed for days (months) on end certainly sealed the deal. One night I was having trouble falling asleep. I rolled onto my right side and looked up at the window into the night sky. I saw lights moving across the blank blackness. An airplane. I watched the sky, which must have been a flight path, until I fell asleep. Every night after that first plane gazing time, I watched the sky for the lights. They always came. The fun part was imagining where the planes were going, where they were coming from and who was on them. I could feel the movements of the planes, even though they were hundreds of miles away. Some sort of strange kinesthetic reach. Eventually I was moved away from that bed, that room, that hospital, I would never forget those lit nights. Those crawling diamonds and blinking sapphires. It was a way to be away from a place that did not feel good or safe.

I have found that I can conjure this same feeling of mild removal and safety whenever I need it. I will try to explain how I do it.

It should be said that this is not a peer-reviewed, evidence-based methodology. There is no method to this. All you need is a little imagination and a little confidence in yourself. I also know that these two things can be hard to conjure when you are living with PTSD or C-PTSD. All I can say is do your best if you want to try this out, and if it doesn’t feel right, stop. It’s not very complicated. I will give you an example of a real-life time that I went to my inner space for peace and a reset. I was in my drawing class (one of my Happy Places in and of itself) and we had been doing critiques for quite awhile. I love seeing my classmate’s work, but offering suggestions and honest critique is not my favorite thing. I can do it if necessary, but I always feel a little strange about it. I’m sure it gets easier. It is part of sharing art, and part of learning from each other. For that I believe it is a good thing to know how to do. I was however, feeling a little drained by about halfway through the class. Fortunately we were given a ten minute break for bathrooms, beverages, and a break. I strode out of the classroom to the restroom, already starting to breathe deeply. By the time I was in the smaller of the two stalls I had already come down off the tension that I had built in my shoulders and back during the critique. I sat on the toilet and let my gaze soften and rest on the stall-door latch in front of me. I kept my breathing regular, and then closed my eyelids almost all the way, until they were slits. I inhaled for a count of 4 and exhaled for a count of 8. You can breathe or not, and you can certainly change the rhythm to what suits your body. I simply found a pattern that felt good in my body and relaxed my mind at the same time. You can keep your eyes open, or closed, whichever feels better for you. There comes a point when I drop into my body. Warmth spreads to my fingers and toes. I feel calm.

I do not lose track of time or place, I merely feel situated in the confines of my body. It does not feel like being stuck or crushed or locked in. Instead, it is a peaceful inhabitation. Usually there aren’t many words going through my head. Sometimes I think a mantra like “I am safe” or “I am strong” and sometimes I just let random words flow through my consciousness. The content of my mind does not really matter so much as the proximity to myself, my inner self, that quiet, unsullied space inside each of us. It’s not supposed to feel any certain way, so look no more for instructions. Basically, I follow my breath and still my body, and usually close my eyes. I don’t picture the airplanes, or that room or that bed, but the feeling of passive peace is the same.

It’s hard to describe something so simple that works for me without sounding prescriptive or bossy. I have been known to be a little bossy. Maybe I just know what I need and I’m not afraid to express myself like I was for years, both due to psychosis or poor self-esteem or both. Sometimes we must do things we are not good at, or are not comfortable with. I love my art class, and I am learning to enjoy critiques, because they are necessary for growth as someone who makes things (still don’t really feel comfortable calling myself an artist), and they are a way to help classmates on their journeys as well. I chose to use my ten minute break in my Happy Place because it is a way for me to reset. When I was younger and experiencing more severe symptoms, I went to this Happy Place much more often, as a way to escape my circumstances, which was usually lying in a hospital bed, tired and sick. Now that I have gained stability and have made some accomplishments, I rely on my inner place less and less, because I am finding that the feelings of safety and strength I find there can be found out here, too, eyes open, breathing regularly, ready for another critique.

There is No “Right” Way

I come home from school, and sling my backpack onto the floor by our dining room table. I have been busy today and I am finally home, alone. C is still at work. After changing into my “comfies” I retire to the kitchen. I am making baked salmon and roasted vegetables. I pull out a bag of russet potatoes from the cupboard and take out four large-ish specimens. They are going down and they don’t even know it. Now, people have been dicing up potatoes for quite some time. Like, a long time. My mother taught me to cut the potato in halves, take one half and slice them lengthwise, keeping the slices together so you can rotate the slit potatoes and chop them into little cubes the other way. There you have it. Now, a curmudgeonly potato farmer’s wife might shriek and throw a potato at me if there is–if she has–a better way to do it, and I have offended her deeply. So, I’m still here, still roasting potatoes, and the only consequence I experience is eating delicious cheesy potatoes with C for dinner while we swap stories of our days. No angry Potato Throwers. It’s all good. My way was enough.

My way is enough. As long as you are not hurting yourself or anyone else and you are speaking and living your truth, then your way is enough and right for you. I’ll just tell you that the gist of this blog post is that there is no “right” way. You might want to stop reading here and that’s okay, you won’t know what dad jokes you’ll be missing.

When I was sixteen I studied at a very well-respected liberal arts boarding schools in the North-Eastern US. I had been living in Taiwan (where I was raised) and this was the first time I had been to school in the states. I was accepted and flew across the world by myself. Scenes of Wellesley College (where I wanted to study after high school), and Harvard (where I wanted to get my doctorate), and the school I had just started at swirled in my teenage mind. There were other things going on in my mind, but these weren’t so positive. I became increasingly paranoid that the ballet majors were talking about me, sneering at each other as they imitated my serious and quiet demeanor. They weren’t, of course. They were actually very kind to me. Everyone there was kind, but I became convinced that eating was dirty (according to delusions starting to blossom) and was sure that the administration was conspiring against me to derail my progress and my trajectory to writing the next pulitzer and attending an ivy league college like Wellesley or Harvard. It was decided that I was not healthy enough to be a student there, so I was sent to eating disorder treatment. I won’t go into details but let’s just say I lost my shit.

The summer after my first round of inpatient eating disorder treatment (was difficult. The behavioral aspects of anorexia nervosa, which I was diagnosed with upon being admitted to a locked eating disorders unit, are under scrutiny these days as we find out more and more about the neurobiology of eating disorders. This is hopeful because I truly believe that eating disorders may start as behaviorally motivated, they very quickly become physiological. I’m not looking for an argument, and I have over a decade of lived experience. Your body and mind literally feel like they are conspiring to kill you. The schizophrenia didn’t help the situation. I tried time and time again to go back to school, eventually got my GED, and then did a semester of college. I was a biology major heading for the pre-med track. I was so excited, but so sick. I lasted a semester–with a 4.0 I might add–and then crashed for six months. If you are reading this let’s just pause here. Below are the stats on going back to work and/or school over the past ten years:

Spring 2012-tried to go back to boarding school, did not work

Summer 2012-got my GED

Fall 2012-One semester of college, then crashed

Not sure on the year, but lasted two weeks in retail

Spring 2016-registered for classes, which I did not take because of the illness and an emergency hospitalization

The next four years I was in and out of inpatient hospitals and finally three years in a state hospital in Massachusetts

In fall of 2019 I became engaged to the most wonderful human ever (in my opinion)

See? See all the failures and gaps. The stutter steps. I am in college now, thriving in the first class I have taken for about a decade. While the above probably sounds horribly cumbersome and exhausting and disheartening. You are right. It also made me who I am today. I am resilient. Now, we’ll look at the past eight months:

Summer 2022-started Clozaril for the fifth or sixth time, and it starts working and I get out of the hospital

October 2022-spent three days inpatient for a tune-up, setting my record for shortest hospital stay EVER

Spent the next six or so months, following a routine, taking a print making class, spending time with family

Spring 2023-complete a 20 hour introductory course to Trauma Centered Trauma Sensitive Yoga

Spring semester-took my first college class in an awfully long time, have loved it more than amy class I have ever taken, and I am finishing it up at the end of the semester, in early May

Spring semester-applied to and was accepted into the BA Psychology program, which I will take at the college in my hometown. This was a big deal

So what? you might wonder. I can only describe my circumstances and it’s up to you to empathize or not. I don’t need anyone’s attaboy. I know what I had to do to get where I am today. I might not have known it a the time. I felt like I had meandered off the path of success and would never find my way back. It took a very loving partner C and my amazing parents to hold my hope flag while I was not able to carry it for myself. I realized that I had not actually wandered off the path. I was on MY path. So I kept going. What choice did I have? I had tried to die many times, and each time I failed. I figured, not without humor, that I wasn’t sane enough to make a plan successful. I came pretty close, but was obviously thwarted. I thank the universe, God, whatever is out there with all my heart. There is no right way to live a life worth living. Some folks have linear paths and don’t think much of it. Others, like me and maybe you, are forced to take the “scenic” route. We didn’t ask for this. Nor can we do anything over again, the “right” way. There is no right way. You are on your way, and that is enough.