Diagnoses

by Jay Paul

Four diagnoses of me or someone in my family have defined a large part of my life. In 1995 my ex-wife and my oldest daughter sat in a doctor's examination room. A nurse placed some wooden blocks in front of my daughter, who sat on the floor. My daughter was uninterested. She looked around the room. She made eye contact with nobody. The nurse gave the doctor a look, picked up the blocks and quickly scurried out of the room. The doctor faced us. He wore a white lab coat over a dark shirt and a tie. He said, "Has anyone used the word 'autism' with you?" I put my arm around my ex-wife. All I could think to do was protect her. She seemed to crumble.

Early on, we thought that the autism was probably mild and that my daughter would have to deal with some major social difficulties. But we were wrong. As the years went by, my daughter did not meet the usual milestones. Most significantly, she lost the few words she knew and was unable to speak. She is now 27. She has profound autism and continues to be nonspeaking; she also has unusual abilities as an abstract expressionist painter. She has sold paintings for hundreds of dollars.

She's silly and mischievous. I recently heard that her caretaker at her group home asked her to stop picking a scab. She giggled, got up from where she was sitting, walked over to the caretaker and gently massaged her cheek. Then she rested her own cheek against the caretaker's, before turning and giggling away as she ran back to her room. Hers is not a tragic story. As the poet Charles Olson says, Limits are what any of us are inside of. Her limits are different than mine, certainly. But perhaps the measure of a life is how we live within the limits given us, and within hers, she is glorious. 

But I'm getting ahead of myself. The next diagnosis concerned me. In August of 1996 I was taking care of my two daughters at home while on summer vacation from my teaching job. My ex-wife was working. It was the third day in a row I got a fever in the afternoon. In addition, something in my mind was revved up and going too quickly, but what it was I couldn't put my finger on. It was distressing, and I was quite upset. I packed the girls into our car to go pick up my ex-wife from work. When we saw her I moved to the passenger seat and signaled for her to drive. I told her we needed to go to the clinic. I began crying. The girls were in the backseat.

I recall sitting in a meeting room at the mental health clinic with my therapist, the on-call psychiatrist, a nurse, and my family. I paced a lot. I swore a lot. At one point the nurse told the doctor I was irritable. I said, "I'm NOT irritable. I'm angry." I explained that I was angry because I had been coming to the clinic for a while, for depression, yet still felt the way I did. I was diagnosed that day with bipolar and was hospitalized. Later, the doctor at the hospital diagnosed me with a mixed episode—an episode of bipolar that includes both symptoms of depression and mania.

For the next 13 years I managed to keep my teaching job, raise my two daughters, and stay married. That started to crumble in 2009. After some tension at work, perhaps caused in part by the administration's discomfort with my having bipolar, I grew depressed. I could no longer work. I was placed on private disability insurance, but that had a limit of three years for mental health issues. Two years later, my marriage ended in divorce. This came after I was taken off Seroquel due to bad side effects that manifested after years of being on it.

Living alone for the first time in years, I began to suspect that various groups of people were plotting against me. I thought some patrons at a bar I frequented hated me and wanted to hurt me for going on a single date with a woman. I thought some fellow writers were in league against me to foil my writing ambitions. I thought other people I knew in distant cities were trying to help, but there was only so much they could do.

This went on for years, slowly becoming more and more elaborate. In November of 2013, I was having coffee with a friend and mentioned to him that I thought a Facebook friend of mine I had never met in person may be using a wheelchair. The next day she posted a picture of herself on Facebook rising up out of a desk chair. It hit me like a ton of bricks: I thought in a flash someone had taped my conversation with my friend at the coffeehouse, and someone had informed this women to post this picture to prove to me that she was not using a wheelchair. From that moment forward, I was convinced that everything in my life was being surveilled.

This feeling caused great anxiety. In late November, I checked myself into the mental hospital for anxiety. I explained to them that I was being surveilled by unknown people, and that I needed the hospital to help me. They put me on an antipsychotic of some sort. When I picked it up at the pharmacy, the label read that it was for schizophrenia. I was a little taken aback, but then reasoned that it was all part of the surveillance. Nobody at the hospital had told me I was diagnosed with schizophrenia. They were trying to knock me off my game, and the hospitals and psychiatry were in on it, too. I did not take the pills. The delusions continued.

In April of 2014 I was hospitalized again. While there, I had a sudden bout of weakness and nausea. I lay down for an hour, and it completely passed. I couldn't figure out how this could happen—how could I so suddenly fall ill and then just as suddenly feel completely well again? It was as if nausea was turned on and turned off. Then I realized that something in me was, I thought, turning the sickness off and on. I must, I reasoned, have a computer in me. The hospital workers convinced me to take Lamictil and Risperidone for mood disorder and psychosis, and by the late fall the delusions had abated a little. I stopped thinking I had a computer in me. I stopped thinking I was being surveilled all the time. But I continued to think something strange was happening in my life, that some shadowy, indistinct group of people were messing with me.

I began to have side effects from the Risperidone. My psychiatrist did not know I was actively having delusions. She took me off of it. A few weeks later, the delusions came back full force and then some. I recall looking at the light in my kitchen and the conviction hit me that, of course, I had a computer in me. Of course there were cameras behind the plaster walls of my apartment that could penetrate the surface and keep track of me. Of course there were people watching me all the time, even when I showered and slept. 

The delusions became more elaborate. I became convinced that I was at the center of an underground war between fascists and antifascists that had been going on since Napoleon. For some reason that always remained unclear to me, I was being forced to step through hoops each moment in order to get through my day without the computer in me inflicting pain on me. I began to think the computer in me could read my thoughts, and I used my thoughts to communicate with those who were surveilling me: they were helping me to jump through these hoops. They had to do with cleaning my apartment, driving certain places, eating certain foods, and so forth. I checked with these voices about every choice I made, no matter how small.

Various things happened. One night, I walked all night long and into the early evening of the next day. I was picked up by police and sent to the mental ward. I refused medication because I thought they were toxic and created by fascists to hurt me. They released me. Eventually, I ended up living in hotels because I thought my apartment had been turned into a group home. I charged the cost, thinking I was using a debit card for an account in England that had millions of dollars in it. Instead, I was running up a Visa bill.

My daughter grew alarmed that I was missing because she couldn't find me in my apartment. She filed a missing person's report, the police tracked me down, and I was hospitalized again. After a series of complications, my voices told me to take the pills offered at the hospital. I did. I kept having delusions. I was injected every two weeks with the maximum dose of Risperidone, but I still had the delusions. I filled notebooks with what I thought were my mathematical and scientific discoveries. I thought I was going to win the Nobel Prize.

I ended up in a halfway house after the hospital. On November 18, 2015, I was sitting in the conference room at that house with my case manager and the house counselor. My case manager put a sheet of paper in front of me that listed "Schizo-affective" as my diagnosis. I asked what this was. She stammered something. I blurted, "Have I been having delusions?" Together, they said an emphatic "yes." I almost threw up. I wasn't being filmed. I wasn't on a film set. I was not battling cannibalistic fascists. I was a mentally ill person in a mental health facility.

I felt so guilty about what I had put my daughter and my parents through. They must have been so worried. But in the ensuing five years, I have put my life back on track. With the help of a mental health clubhouse and my younger daughter, I have made good friends and come to terms with my diagnosis. It is now a given of my life. Diagnosis can be freeing in a way. It defines for you what is happening in your life. It is also restrictive: the stigma against people with serious mental health issues is profound.

As with my older daughter, my life has limits that are different from those of neurotypical people. There are certain things I can't do, such as hold down a 40-hour a week job with its attendant pressures and stresses—my last two full-time jobs ended with me on disability.. But I wonder what these limitations make possible for me. What specific strengths do people with schizoaffective have? What can we uniquely contribute to society and humanity? I am struggling to come up with answers to these questions, and I think they are to be found. We are not simply sick individuals. Schizoaffective provides us with ways of knowing only we can have.

Indeed, medical diagnoses of developmental and mental conditions are reductive and emphasize supposed deficits. My daughter, for instance, functions at the cognitive level of a neurotypical 18-month-old according to medicine. However, anyone with her delicious sense of irony could not possibly be at that level. And I'm not the only one who thinks so. Her caregiver of almost 20 years believes she is smart, too. I believe her more than I do the "experts" who base their assessment on seeing her for 20 minutes and administering a test.

As for me, I am currently convinced that schizoaffective helps me to see into what is commonly known as the "spiritual" realm. While I don't believe in spirits, including God, I do believe that spirituality and religion point to realities beyond what is considered ordinary. I want to find a different vocabulary than spirituality for describing these realities I have seen both when having delusions and hallucinations and when I have not. 

In short, in spite of the pain and heartache, I refuse to see my life as an unremitting tragedy because of these diagnoses.

I will get into some of these issues are at a later date. But before I end this post, I need to identify the fourth diagnosis that has helped to define my life. In 2019 I learned my mother has Alzheimer's.