The Sand Mandala: A Schizophrenic Story About an Arts Journal and Adjuncting

by Jay Paul

(Neurotypical people have no cognitive or mental health issues, such as autism or schizophrenia. They are "normal." Neurodiverse people can use their conditions to create unique possibilities for human culture that they alone are capable of doing. Yet, their conditions are usually seen as only disabilities.)

This story is about triumph, at least for now. I say that because portions of it may be harrowing to those of you not familiar with what people diagnosed with serious "mental illness" go through. For us, it's par for the course. I've heard much, much worse stories. But this is mine.

Before I get into the story, let me address some misconceptions about schizophrenia, a condition I have, correctly, been diagnosed with. It's nothing to be afraid of. For me, personally, it means that, every few years, I go through a bout of psychiatric delusions for a few days. These usually take the form of thinking some acquaintances of mine, who live near me, are messing behind my back, and that old friends, who live far away, are, somehow, helping me. Usually, I see through the ridiculousness of these delusions, and various intercessions, pharmacological and otherwise, take care of them. 

Schizophrenics, to address a common misconception, are not unusually violent. About 4% of violent crime can be directly attributed to mental illness. Meanwhile, about 15% of violent crime involves people in a romantic relationship. It would make more sense to stigmatize all lovers as potentially violent, rather than schizophrenics.

Some schizophrenics fare much worse than I do, of course. It is possible to seem "debilitated" by schizophrenia, but I hesitate to use that word. This is because I have a brilliant adult daughter who is a nonspeaking autistic. She is technically labeled cognitively delayed—the current euphemism for "mentally retarded." Yet she has sold beautiful paintings in the hundreds of dollars. "Mentally retarded?" Yeah, right. As you can imagine, such an experience makes me highly skeptical about claims about the limitations others claim plague us neurodiverse people. 

Neurodiverse people have tremendous insights. I know. Because I have had them because of my condition. Right now, the one that is affecting me most has to do with conceptions and delusions. When I came out of a profound delusional episode in 2015, which will be detailed below, I became incredibly sensitive to delusions in myself. Then I saw them in others. I saw them in the neurotypicals and realized they are clearly living their lives based on false, but societally accepted, premises. This realization was staggering and disorienting. So I thought and thought. I asked myself why people would go through life believing falsehoods, conceptions that clearly, when examined, do not reflect reality. I realized that conceptions are not about reflecting reality. They are about making a home for us, where we can shelter ourselves and feed ourselves and enjoy each others' company on many levels. Next, I asked myself what happens when people attempt to force conceptions to reflect reality. The answer is a kind of violence. 

Am I the only person to have such an insight? Probably not, although I have yet to read anyone who shares it. The important point is that I came upon this insight due to my personal reflection on experiences specific to schizophrenia. It is a kind of schizophrenic epistemology. It demonstrates that schizophrenics, such as myself, have much to contribute to human culture. Yet we are consistently dismissed as merely delusional, when the only difference between our delusions and those of the neurotypicals is that theirs are socially accepted, normative, and ours are not. That's it.

Now that I have established my, and all schizophrenics, value to human culture, I will tell my story. I have good reason to believe that my schizophrenia is the direct result of a snowballing series of events that began to occur when I served as an adjunct instructor for one semester at a community college in 2013. 

But we will go back a little further, just to establish context. In 2007, at a time I was diagnosed with bipolar, I was working at a prestigious prep school. I made my immediate boss nervous because a few vociferous students would complain about me every fall, yet every spring, at the end of the year, I received class evaluations this boss himself described as sterling. To get at this discrepancy, which I explained to him was due to some students taking a few months to warm up to me because I was the only Ph.D. in the department and taught from a slightly different angle, he had an administrator interview 15 students he handpicked. Some were the students who complained about me. The deck was stacked. This administrator came back to report that to a person, the students said they learned more about reading and writing from me than from any other English teacher. But even that wasn't good enough for my boss.

Two years later, the school attacked me again. This time, I have good evidence they went after my job solely because I had the label "bipolar." Other issues were prevalent, such as my tensions with the school head who most of the faculty considered a terrible bully. I stood up to him. But my guess is that some students got wind that I had bipolar, told their parents, and the parents pressured this top administrator to fire me. The administration treated me so badly, I became depressed. I had to resign. I ended up on the private disability from the school. Disability for mental health issues lasts only three years. 

When I came off disability, I was in the midst of a divorce. I was also terrified about how we would get my younger daughter through college. I was working as a freelance editor. I wasn't bringing in enough money. So I took a full-time job at a group home in order to get a little more money and health insurance. I slept at the group home three nights a week and helped the developmentally disabled men with their breakfast, meds, and so on in the morning. I also got them off to work. The job lasted three years.

While doing that job, I started an Internet arts journal. Since I knew a number of prominent writers around the country who were familiar with my writing and, perhaps, felt sorry for me because I had an autistic daughter, they agreed to be in the journal. The concept behind the journal was to arrange various art works, from literature to music to visual art and so on, in galleries according to musical concepts. The works played off and with each other on a number of levels. I believe I succeeded because a couple musicians mentioned that they saw the music and the dance. Since I'm schizophrenic, I get to brag a little, the deck is stacked against me. One composer publicly described my editorial collage techniques as "brilliant," saying that they reminded her of some of the techniques she used in her compositions.

As some of the earlier prestigious writers moved on to other things, amazedly, others replaced them. I don't know what motivated them. Here I was, a Ph.D., yes, but living in a rundown studio apartment, working in a group home, and running this arts journal off my laptop and Internet connection. Looking back on it now, it almost seems impossibly romantic. At the time, I was just having fun. I think the prominent writers were motivated just because they dug the journal. What else explains it? I could do precisely nothing for them. Some even told me they "loved" the journal.

Since I am a very minor writer, my sympathies were not with the prestigious but with those like me—the forgotten, the passed-over, the amateur. I took particular delight in constructing clattering dances between the prestige of avant-gardists coming from the academy and just regular folks who happened to write poetry. It created strange and delicious multivalent ironies. I wasn't putting down anyone's prestige. If they find themselves in such a position, more power to them. I hope they enjoy it. But it is important to show that prestige is constructed, not natural. What fun!

To my surprise, this fun actually looked like it could get me back into teaching. As a direct result of local connections made through this journal, I got an adjunct instructor job at a community college in 2013. I continued working full-time nights at the group home. During the day, I worked at the community college. I was so grateful, so happy, and so thrilled to not be teaching prep school students who already had all of the advantages. And then, another surprise: I was told I should apply for one of two tenure-track positions opening the next year. I couldn't believe my ears: I might get back into the middle class! Yes, I dreamed of buying a condo. But more, I dreamed of putting my daughter through college.

Then something weird happened, and the snowball that led to schizophrenia, I believe, started. A month or two later, they acted as if they never said anything about the tenure track position. I questioned people, and they acted dumb. An administrator even said to me that I could apply for the positions for practice if I wanted. She also suggested that I might want to apply for positions out of the Twin Cities. Bizarre. What happened? These things usually come down to money. The college was unionized, and there was a strict pay scale that counted all my years of prep school experience. With my Ph.D., they probably learned I was prohibitively expensive. My bipolar probably had nothing to do with these decisions, but you never know. Employers are ridiculously nervous about it, I've learned. The college did know of my bipolar when I was hired. I have heard about a third possibility, but I have no hard evidence.

The combination of dangling the possibility of returning to the middle class and then withdrawing it devastated me. By the end of the semester, I was a wreck. I was beginning to have what I now recognize as delusions. I believe they were caused, in part, by the stress of this unintentional bait and switch. (I say "unintentional" because there is absolutely no reason to believe the people at the college wished me actual harm.) Can schizophrenia be caused by a combination of genes and environmental stress? Possibly. The science isn't clear. Some viruses may even contribute. But literature tells us something different. The stories of the ages, such as King Lear, clearly indicate that many great writers believed stress, in some people, can lead to what was once called madness. I believe this, in part, is what happened to me. The stress began with the bizarre dangling at the community college.

I left the college in December, and I was in trouble. The group home did not pay enough to live on. I had lost the contacts that made my editing service possible when I chose to drop it to focus on the teaching. There was not enough money. I took a day job packaging CD's in a factory, but they fired me the first day after I took a bathroom break. I applied for hundreds of jobs—as a teacher, a library worker, a group home supervisor, a webpage operator, and on and on. I occasionally got an interview, but nothing more came of it. My delusions became elaborate. I was beginning to think I was at the center of a great, underground war between fascists and antifascists that stretched back, get this, to Napoleon. I spent my free time rewriting world history according to my delusions. 

I managed to eke out one last issue of the arts journal in spite of my poverty, stress, and delusions. I was just happy to get it out. I didn't believe it was as good as earlier issues, but a writer friend, who went on to receive some serious academic attention, actually thought it the best. Go figure. It was 2014. That was the last one. I had been careful all along to back up the website on CD's. I kept two sets in my apartment.

Finally, in the fall of 2014, I got a well-paying second job as a tutor. I finally had a little bit of money. But the momentum of the delusions was not abating. I threw out a lot of my possessions, including, I now believe, the back up CD's for the journal. In 2015, I landed in the psychiatric ward. They put me on some strong medication, but it didn't help. After the hospital, I went to a rehabilitation group home for three months. While there, a friend took me out for coffee. He offered to pay to keep the journal on the Internet. It would have taken some doing because I had no credit cards, no bank account, no Internet, nothing. But we could have finagled it. Unfortunately, I wasn't thinking clearly, and his offer simply didn't make sense to me. I thought it had been archived by some friends of mine who, of course, were nonexistent.

On November 18, 2015, the delusions dropped in a dramatic flash. I realized, quite suddenly, that I was not at the center of a centuries old war. I was not a big deal. I was not going to win the Nobel Prize. I was a schizophrenic, who had a few books by minor presses to his name and a useless Ph.D. There was a knot at the pit of my stomach for days. Unbeknownst to me, somewhere, someday, the journal quietly slipped off the Internet. It is now almost my sand mandala. I say "almost" because I still retain all the emails with the attached links and documents. I could very possibly recreate the journal.

I left the rehabilitative center completely broke—on rental assistance, food stamps, and General Assistance. I couldn't afford to keep a car, which meant I couldn't visit my autistic daughter regularly. I feared she was lonely, and that she worried about me. I got involved with a social services institution, and this made all the difference. While I was depressed according to my longtime therapist who saw me through most of this, I managed to get a job in the mental health field. I still work there today, helping people I feel are my kinsfolk because we have shared experiences.

My resurrection had begun. I came back, for me, all the way and then some. In 2018 a noted asemic writer and publisher brought out a quirky poetry book by me that has subsequently been taught for a few years at the university level. It is filled with short, subtle poems that emerged from the experience of recovery, I now see. They lacked my characteristic expansiveness, which has returned in the last couple years. I have a lot of affection for that book. I actually wrote it according to a year-long assignment given me by the publisher. I am so grateful for all he has given me.

In 2020, when the pandemic hit, I found myself writing essays. I didn't know what to do with them since the publication game has become ridiculous due to all the MFA's vying for spots in journals that nobody reads, that exist solely for writers to add a line to a CV. Since I wasn't an academic and didn't need credentialed publications, why play this absurdity? With my daughter's encouragement, I took to the Internet again and started this blog. I quickly started farming out entries to a newsletter for a mental health agency, and then some other places involved with mental health. People, my kinsfolk, responded positively to these essays.

No, I wasn't teaching. No, I wasn't an academic. In fact, my job took only a high school diploma. But my psychiatrist told me one day that I probably had no idea how many lives I had saved while doing it. I had never thought of it that way before. I had trained to save souls with reading, writing, and thinking. Instead, I was saving physical lives with my skills learned as a person dealing with neurodiversity.

I wasn't using my academic training for anything close to what it was specifically designed for. But I was making a marked difference by applying the writing and thinking skills I learned there to people who had a need for them. Simply by writing from my personal perspective, I learned that I helped some people articulate their experience, and some of those people even used my writings to help their family learn what it is like to live with neurodiversity. 

In 2021, I decided to cut back on this blog, schizoaffective, and return to the journal, although I have cut back on the ambition and am only producing a blog. I have reconnected with a lot of writerly friends. Both of my blogs have a small readership, helped by Facebook links, and they seem loyal. 

I said at the outset that this was a story of triumph. It is. Most emphatically so. My deepest regret is that I have no way to communicate to my parents that I am a success. I so wish I had something, anything, to make them proud. Feeling like you let down your family really hurts. I tell them about being taught at a university level, but that's not the same, for them, as holding a conventional middle class job. Maybe soon something will break that I can show to them, soon, before dementia gets much worse. 

I don't feel as if I failed my daughters. My autistic daughter just needs me to show up—and I have a car now—love her, bring her nuts, and make sure her paperwork is in order. I have also started a webpage for her paintings at the suggestion of a professor acquaintance who also has an autistic child. My other daughter clearly sees me as a success. Some of her friends, who have disabilities, think my writings are cool. What more can a parent ask for, than to seem cool to his child's friends?

The best news of all is that in May 2021 my youngest daughter, at the age of 25, graduated from college. I even managed to help her financially a little bit. In recognition of this, she awarded me the large ribbon whose photograph is at the top of this essay. I, of course, did not get her through college alone. She deserves most of the credit, as does her extended family, my ex-wife, her sister with profound autism, and all the mental health and social services workers who helped me get back on my feet so I could be there for her.

I'm getting less and less fearful about letting people know about my diagnosis. I feel, now, as if it's a part of me, and to lose it would be to lose myself. Of course, it has caused some major pain in my life and those of my loved ones. But it has given me so much, too. The combination of my intellectual training, writing abilities, and schizophrenic insights gives me access to articulatory possibilities probably few have ever experienced. I choose to use this opening to write on this and my other blog, and to publish with my friend's micro press, because the whole literary publishing game is too stressful to engage in: I need my equanimity. I take good care of myself and live like a monk, meditating over two hours on most days and adhering to a careful diet and exercise plan. 

I know I am doing good with this blog and my other one. I am not sure I would do any good publishing in academic and literary journals. Who reads them? That I just survived is reason enough to celebrate. I feel, instead, as if I am thriving, and really living. This is what it is all about, for me.

(Note: Both blogs and my major Facebook page which drove people to them ceased publication in July 2021 because of the stress of being on Facebook while working in mental health and also the prejudiced response to my schizophrenia by some Facebook "friends." I am now pretty much off the Internet and publishing myself and other writers, including on issues pertaining to mental health, in a micro press. [July 30, 2021])