LOCKDOWN: Narrative (2,433 words)
I had my first psychotic experience the last day of Elementary School (1966) and several more during Junior High School. My parents thought I had a vivid imagination. Experimentation with recreational drugs triggered a frightening psychotic break that forced me to take a medical leave from college (1973) and seek treatment. I was eventually given a diagnosis of Bipolar Disorder by an endocrinologist who treated me for twenty years.
The endocrinologist and his wife had Bipolar Disorder. Also, being the endocrinologist’s patient meant being his research subject. In my experience, I have found researchers to be more open minded than psychiatrists and regular doctors.
I took lithium and tricyclic anti-depressants for nearly twenty years. I lived a relatively normal life without psychiatric hospitalizations or serious legal issues. I worked, married, and had three children. I worked as a cook, a photographic lab technician, a toddler teacher, and supervised a special playground for Elementary children. I developed a professional reputation for managing toddler classrooms and young children well. I did house remodeling on the side. My parents financially supported my family as needed.
Mania and marital issues contributed to extramarital affairs in 1986 and 1987 that fractured my marriage. I did everything I could to repair my marriage.
I underwent private therapy between 1990-92 due to dissociative symptoms and amnesia related to my childhood. My therapist suspected I had been sexually abused as a child and that I had multiple personality disorder. Therapy focused on recalling what I had forgotten. After two years we concluded I would never remember. I suspected the amnesia was related to my mental illness rather than sexual abuse as a child.
My fractured marriage, a bad work situation and the failure of my antidepressants resulted in a deep depression in the summer of 1992. Shortly afterwards, my parents could no longer afford the fees of the endocrinologist. My endocrinologist cried and told me he loved me when he told me he could no longer finance my healthcare.
I entered the Texas public mental healthcare system (known at the time as The Texas Mental Health Mental Retardation Authority <MHMRA>) as an indigent client in 1994. At the time, MHMRA had a reputation for “not being client friendly.” MHMRA was also known for having a high turnover of staff and clients.
I had one psychiatrist for a number of years- which was unusual and a mixed blessing. He clearly took a special interest in my case despite his heavy case load, but our relationship was fraught with conflict. He did not believe my self-reports, and I did not think that he knew what he was doing. A central issue was my chronic anxiety. My psychiatrist told me anxiety was normal and healthy and he would not treat it.
My research indicated it could be appropriate and necessary to treat chronic anxiety. On top of my research, I talked with many other MHMRA clients in the MHMRA waiting room who had been prescribed tranquilizers for their anxiety.
I got worse under MHMRA care because my MHMRA doctor insisted on trying all the antidepressants that had failed under my endocrinologist’s care. My family was alarmed by my deterioration.
I was given a secondary diagnosis- Borderline Personality Disorder (BPD.) My MHMRA therapist at the time, and all my past therapists, believed this was a misdiagnosis. I knew quite a bit about the diagnosis because a person close to me had been given the diagnosis in the past- prompting me to engage in substantial research. I also interacted with three other people- two of whom met all the DSM1V criteria and one who had the diagnosis. I challenged the accuracy of the diagnosis with my psychiatrist.
Throughout my care, MHMRA my psychiatrists and caseworkers periodically encouraged me to hospitalize myself. They described hospitalization as a safe place to have a vacation from daily stressors that drove some of my symptoms. I was highly resistant to the idea.
The summer of 1998 I had a frightening psychotic episode that led me to voluntarily commit myself to a locked psychiatric ward in The Harris County Psychiatric Center (HCPC.) HCPC was primarily a triage facility- the typical stay was three days. I was there for almost two weeks. Lockdown Part 1 begins with the onset of this psychotic break.
Towards the end of my stay at HCPC, I was given the tranquilizer Ativan to control my anxiety and insomnia. For the first time in many years, I had a sense of well-being. I didn’t want to do much but sit and enjoy this state.
I saw my MHMRA psychiatrist about two weeks after my release. I was still on Ativan and felt very well. My MHMRA psychiatrist strongly disapproved of Ativan and took me off Ativan cold turkey. It was the worst experience of my life. My research indicated the correct protocol for taking someone off Ativan was tapering off the dose. I vowed never to be put in this position again.
The next time I saw my psychiatrist my spirit was broken by cold turkey withdrawal from Ativan. He recommended Mellaril- an anti-psychotic, to treat my anxiety and insomnia. I agreed- anything would be better than the profound anxiety I was experiencing. Mellaril made me a more compliant patient because I was like a zombie. I only had a couple of hours a day when I could help my children with their homework.
I don’t know exactly how long I was on Mellaril- it eliminated much of my episodic memory. I believe that one of my adult children was diagnosed with bipolar disorder when I was on Mellaril. I helped this adult child with the process of coming to terms with the illness, medication titration, interacting with psychiatrists, and getting therapy. The adult child went on to graduate from a prestigious university.
In the summer of 2006, I drove myself to an emergency room because I was having heart attack symptoms. The emergency docs diagnosed and treated me for an apparent heart attack. I was hospitalized, and after lots of testing, the final diagnosis was a panic attack. The total cost of the panic attack was around eighty-thousand dollars.
Shortly after that, a new MHMRA therapist asked me to list my two most disabling symptoms. I answered anxiety and insomnia. I also reported the eighty-thousand-dollar panic attack. I reported my MHMRA psychiatrist had taken the position that anxiety was healthy and would not treat it. Finally, I reported that my MHMRA psychiatrist did not believe my reports that insomnia was aggravating my mental illness symptoms. Instead, he told me that I was getting enough sleep.
Within a week, my new MHMRA therapist had convinced my psychiatrist to prescribe me a tranquilizer for anxiety and insomnia. The medication (clonazepam) made a major improvement in the quality of my life. My anxiety decreased, I slept, and other symptoms of my illness decreased. For the first time during my MHMRA care, my quality of life improved.
The same MHMRA therapist shared she had been diagnosed with Depression w/psychotic features, described herself as mean, and laughed at some of my self reports. For example, I reported a source of my anxiety/insomnia was reading about how phone batteries caught on fire. I was afraid this would happen while I slept.
My therapist laughed and said that was the stupidest thing she had ever heard. In fact, she kept a list of stupid things, and this report went right to the top of her list.
This paradoxical form of therapy was very effective for me then. It forced me out of the way I looked at myself. It was like a jolt of reality breaking through my symptoms. I looked forward to therapy because I was curious about what she would laugh at next.
Shortly there after, my therapist was promoted and went to another clinic closer to her house. I acquired a new MHMRA therapist and a new psychiatrist.
My new MHMRA psychiatrist was visibly upset when I told her I was being given Mellaril for anxiety and insomnia. She said that it was an inappropriate use of the medication. She stopped prescribing me Mellaril immediately. For the second time, the quality of my life significantly improved.
My new psychiatrist was unusually patient, respectful and empathetic. She recommended the antidepressant Lexapro. I was reluctant at first- previous attempts with anti-depressants had escalated my anxiety to an unbearable level. I eventually gave in and the clonazepam helped me tolerate the initial energizing effects of Lexapro. Lexapro decreased my symptoms within a week- a pattern that would be followed by all subsequent effective psychiatric medications. For the third time, the quality of my life improved.
The same psychiatrist recommended the anti-psychotic Risperdal. My experience with Mellaril led me to reject the idea. However, this psychiatrist listened to me and expressed her concern for me. She was very patient. She had been right about Lexapro. I tried the Risperdal. For the fourth time, the quality of my life improved.
Concurrent with these events, another one of my adult children was diagnosed with bipolar disorder. As with the first child, I guided the child through the process of coming to terms with the disorder, medication titration, how to deal with psychiatrists and gave advice about therapy. This adult child also went on to graduate from a prestigious university.
I got another psychiatrist. He seemed interested in increasing the dose of Risperdal as high as possible. At the higher dosage I experienced akathisia for months. Akathisia is defined as “a state of agitation, distress and restlessness.” My experience was that I constantly felt like crawling out of my skin. This was a definite decrease in the quality of my life. Over a period of many months I eventually adapted to the higher dose.
My MHMRA therapist left to go into private practice. He said he would accept my Medicare. I became one of his private clients. He kept pointing out that I could find a private psychiatrist who accepted Medicare and possibly get much better care. I was reluctant to leave MHMRA- it was flawed, but I might have similar issues with a private psychiatrist.
I belong to a small subset of people with mental illness who often think about suicide but do not act on such thoughts. At the time, MHMRA was not set up for this kind of patient. Any mention of suicidal thoughts set off a series of responses for a genuine suicidal person. As a consequence, my MHMRA psychiatrist told me not to report my suicidal ideation to caseworkers.
At some point, I fell into a deep suicidal depression. It scared me, and I considered hospitalizing myself for the second time. I went to the MHMRA crisis clinic. This was a big deal for me- a giant leap of trust.
My intake person was young, and she read the intake questions from a sheet of paper. She told me she thought I was faking and trying to game the system. It occurred to me that this assessment was consistent with a diagnosis of Borderline Personality. I left more suicidal than before. I fantasized blowing my brains out in the MHMRA waiting room. I struggled not to drive myself into overpass supports on the freeway on the way home.
I called my MHMRA caseworker and psychiatrist multiple times and left messages for help. They failed to respond to my calls. I white knuckled my way through the episode. I decided to seek private care. Through sheer luck, I immediately found an excellent psychiatrist who specialized in schizoaffective disorder.
My intake with my private psychiatrist went well. He listened, showed empathy, and explained his observations. He recommended a second anti-psychotic (Seroquel) and gave a detailed explanation why. I began taking Seroquel and it immediately made a significant increase in the quality of my life. Seroquel calmed me down, enhanced the organization of my thoughts and decreased the intensity and frequency of breakthrough delusions and hallucinations.
My new psychiatrist also offered therapy. He was an excellent therapist. I continued to improve under his care and with talk therapy with my primary therapist.
Based on my experience with the anti-psychotics Seroquel and Risperdal, I came to the conclusion that I had been suffering from a low-level psychosis most of my life. My psychiatrist and therapist agreed. I began to examine the schizophrenic side of my disorder.
Around 2015, my private psychiatrist had to leave Houston for health reasons. Before he left he discussed his impression of the psychiatrist who was going to replace him. He stated that they seemed to be in agreement on many issues and that he felt that I would get along with the new doc. This turned out to be the case.
So, between 2006 and 2015, I gradually, but consistently, improved. Then Donald Trump was selected by the electoral college to be president and I, like many of my psychiatrist’s other clients, began to experience escalating anxiety. As a person who has lived with mental illness for fifty-two years and who has been trained to identify mental illness in others, I found much of Trump’s behavior alarming.
I, and my parents depend on Medicare, Medicaid and Social Security benefits. Republican attempts to slash these programs pose a clear and present danger to my future and the future of my parents.
Concurrently, caring for my elderly parents became more stressful. In order to cope, I needed to increase the dosage of some of my medications. In my last med check my psychiatrist pointed out that I was taking three medications at such high doses that any one of them would cause most people to sleep much of the day away. She stated she was “amazed” at how alert I was and expressed her concern that I might fall asleep at the wheel. I explained I usually took a nap in the afternoon but I still felt over energized more often than not.
On the positive side, I am doing fairly well. On the negative side, I may have developed a tolerance for some of the same medications that help me the most.
Finally, at some point, the diagnosis of Borderline Personality Disorder was removed. I believe it was around the time I received the diagnosis schizoaffective disorder.
Caveat: I lack access to medical records that would confirm the dates of events as they are laid out in this narrative.