On June 26th, 2013, after being cured of 35 years of suffering from schizophrenia, I left my apartment wearing my new custom-made t-shirt that boldly declared “I Beat Schizophrenia” on the front. I then went to the local print shop to print out a business card sized photo I had made stating that I was no longer insane. I walked proudly up to the clerk and asked her to laminate it for me.
“That is true, you know,” I told her, smiling. Her face figured itself into a look of uncomfortable fear. She remained silent as she performed the task. I was oblivious to her discomfort as I paid for the service.
I went about my day, joyfully enjoying my freedom, reveling in my newfound sense ability. The whole world was a new place for me now that I could see, hear, and think without the constant interference of hallucinations and delusions. I walked around Milwaukee’s east side casually enjoying the small shops, stopping for a coffee, and walking by the lakefront. After a few hours, however, I did become aware of people staring at me. I noticed the aura of space that I was given, the odd looks, and the strange confusion in anyone I interacted with. It began to roll through me that there was no context in the culture of psychiatry in the United States for someone being cured from a severe mental illness such as schizophrenia.
After a few weeks it became clear to me the very real confusion, misunderstanding, and complete lack of comprehension that I faced as a person claiming to have been cured of psychosis. Being a schizophrenic claiming to no longer suffer from schizophrenia only made me seem more schizophrenic due to the current culture of psychiatry. I was drowning in the fact that the stigma of being psychiatrically disabled would not cease so easily with a t-shirt and a self-made sanity card. I suffered heavily from survivor guilt after seeing a schizophrenic man talking to himself on the bus. I couldn’t escape the injustice. I became despondent, isolated, frightened and sad.
Desperately Seeking Sanity
In late 2012, I was suffering horribly from hallucinations, auditory and visual, as well as dangerous delusions that usually involved taking my own life in order to appease the voices. I had resisted taking daily antipsychotics and multiple offers from psychiatrists for electroconvulsive therapy. During this time, I was on a desperate search to find a different way to manage schizophrenia. I read many books, and researched everything I could about the history of mental illness, the birth of diagnosis, mental illness in other parts of the world, and the rise of pharmaceuticals until I came across the work of Dr. Abram Hoffer. He was a psychiatrist in the 1950’s who began treating schizophrenia, severe alcoholism, and other psychotic conditions with large doses of niacin. His work was pushed out as Haldol and other antipsychotics became available. At this time I had nothing to lose, so I set out trying to find a doctor who would facilitate Dr. Hoffer’s treatment.
After much searching I found a small, local clinic with a doctor who was willing to treat me with niacin. Dr. Fox was kind and willing. It was incredibly fortunate that I found a physician who was familiar with Dr. Hoffer and orthomolecular therapy. We began treatment. I was told to prepare for a 6-month period of serious detoxification in which I would become very ill. Within the first month my symptoms began to fall away, one after another, like a building collapsing in on itself. First the auditory hallucinations vanished. I was astounded at how incredibly loud the world was without the constant interference of the voices and white noise. Then the visual hallucinations went. I experienced severe vertigo as my eyes adjusted to never having seen accurate depth perception before. The physical illness also began to set in hard. Nausea, sweats, pain, weakness… the fact that I was experiencing such progress kept me going.
The delusions were the last to go. When thinking of how the senses and the brain process information, it all made too much sense. The delusions were built around faulty sensory input via the auditory and visual hallucinations. The brain naturally creates a narrative reality to explain what is being experienced through the senses. Once there was no erroneous input for my brain to interpret, there was no need for the delusions. My progress was undeniable and beyond anything I expected from any kind of treatment for schizophrenia. As we neared the 6-month marker for the detoxification to be complete, Dr Fox asked me if I was willing to talk about my experience with niacin treatment and be a case study that he could present to colleagues in the field.
At that time, I declined. I was free from the suffering that had haunted me my whole life. I was finally free. I was not eager to be held up in front of the same psychiatrists that had prescribed me dangerous medications and wanted to subject me to electroconvulsive therapy. I was not a science project for them to gawk at. I am a human. I wanted my life, symptom-free, I wanted a fresh start, and I wanted to experience everything I could with my newfound freedom.
The way I was viewed and treated when I got my freedom and stepped back out into society is what made me rethink my decision to share this amazing gift of real health. Not for doctors, not for psychiatrists, not for a research paper, but for others like me. Telling my story as a patient is an act of empowerment. I would not give that power back to the system of psychiatry so easily. I decided that if I were to tell my story, I would tell it my way, from my perspective, and it would exude passion, authenticity, emotion, and humanity. If there is anything that the current industry of psychiatry is in dire need of, it is a large injection of humanity. This is how I came to create my presentation Schizophrenia Deconstructed (see video below).
I began hallucinating at a very young age. I can remember hearing voices and seeing my toys move by the age of five. I suffered severe early childhood trauma, including my mother attempting suicide when she was seven months pregnant with me. Her version of the story is that I kicked her from inside her belly just as she was about to slit her wrists. She always says that I saved her life. My version of the story is that at that moment I became a fighter, destined to survive. Once I was about 3 years old, my mother and I were in a stable home, but the abuse continued until I was 8 years old. I will not retraumatize myself by going into details. I do believe schizophrenia became my way of coping with my reality.
My parents have told me stories of my absolute hysteria when they would try to tell me that there were no voices, and that my stuffed animals were inanimate. I remember my father trying to calm me down by telling me there were no monsters in the closet. I replied to him that I wasn’t afraid of monsters, I was afraid of the people living in the sink, the walls, and climbing on the roof. I was born in 1977, so ADD and autism hadn’t been invented yet. I was considered a very odd child. I tested off the charts on most standardized tests so my teachers in school left me alone to do my advanced work. I didn’t have many friends and lived in my own world of terror and confusion. I had my first suicidal ideation at age 9. I was taken to emergency rooms with fits of temporary blindness. At age 11, I ended up in a psychiatrist’s office. I very quickly sensed the societal dangers of being so different and I very quickly learned to lie to doctors.
Adolescence was a painful and lonely time. My hallucinations and delusions became more terrifying. I began to self harm (not to be confused with cutting behavior) in order to invoke endorphins to obtain some relief from the chaos of my senses. At the age of 16 I attempted suicide for the first time. I took a lethal dose of painkillers and tricyclic antidepressants. I still was not admitting to anyone that I heard voices or had strange or frightening thoughts.
Adulthood proved to be more challenging in maintaining my ruse and I was caught in a full-blown psychotic episode. I was diagnosed with just about everything — bi-polar 1, PTSD, borderline personality disorder, schizo affective disorder — and I was told I was severely mentally ill. By age 19 I was on social security disability and fully took on the identity of an insane person with no hope for a future. I was also prescribed many, many medications. I ended up in the system at Milwaukee County Mental Health. I was drugged against my will, I was put in restraints multiple times, I was treated like an animal, and I was threatened with electroconvulsive therapy.
At age 21, I was put on stipulations, which means I was court-ordered to take my meds and serve three months inpatient at County. Two days before I was to show up for my sentence, I fled the state of Wisconsin. I was terrified I would be forced to partake in ECT. I waited out my time and returned home. I escaped the system, I took myself off most of my medications, and at this time, I decided to try to make a life for myself away from the walls of County, as well as the walls of my diagnosis. I practiced diligent self care, stayed in therapy, and went to college. I was a successful student, I began working in social work at youth shelters and began my master’s degree in counseling psychology.
I have been called a “high functioning” schizophrenic. I completely reject that notion. I lied extensively to protect myself and my career. I am also a white woman with benign features and the ability to speak. Language is a gift that not all people afflicted with schizophrenia have. We live in a racist, ableist society, and I used my privilege as a shield. Schizophrenia is a horrendous illness that does not discriminate in severity. With factors such as race, discrimination and ability at play there is no way to measure true potential except by a grand void of loss. I used my intelligence to hide my illness and become an adequate con artist so as to not end up back at County. There is no place in my story for “high functioning,” there is only fear of getting caught. I worked with children. I was training to be a therapist. I was excelling in every area of my program and precociously fighting for a “normal” life. Living in such fear was a destructive, shameful, self-harming lifestyle. I’m not “high functioning.” I was surviving with the tools I had.
In 2011, I was outed to my grad program by another student. The student worked as a receptionist in a mental hospital I stayed in over winter break. I did successfully file a HIPPA complaint, but the damage was done. The repercussions of that incident were swift and within six months I was barred from completing my degree.
The aftermath of being discriminated against by a university is what led to a severe decline in my mental health and my voracious search for answers. I found what I was looking for. I found Dr. Fox, and I also found I had to face myself. After being free of all hallucinations and delusions I then embarked on a therapeutic journey to treat the underlying trauma that schizophrenia so capably protected me from.
Most of my most severe delusions involved saving children. There were babies in garbage cans, children stuck under cars, in walls, crying to me from vents and sewers. Then the code breaking would begin. I had power in my hallucinations to save those children. I had signs, colors, letters, patterns, and voices to guide me. Once I was cured of my sensory malfunctions, that power was gone. There were no magic codes to break and that child was me. I was fortunate to work with a therapist from the local VA. My PTSD assessment clocked in at what the VA team sees with returning combat vets. I suffered from nightmares, sleep disturbances that included harming myself in my sleep, feelings of not being real, detachment, rage, and endless mood swings. Niacin treatment is not a quick fix and it is pertinent to address the underlying trauma. The only time I wished for my hallucinations back was while unpacking the nightmare of my life without the maladaptive protection of delusions that I was used to. All my motivations for behavior suddenly changed, and I had to reconstruct myself, my identity, and learn to finally heal from lifelong trauma. It was a delicate yet beautiful time. I will always strive to maintain my mental health, as every human being must do. As I look back on my story and how I got to BE, I am eternally grateful to be alive.
Then, with the support of Dr Fox, I created Schizophrenia Deconstructed. I am proof that the paradigm of the industry of psychiatry must be shifted. I stand tall as that proof for others who suffer from schizophrenia. We have presented the show several times for practitioners in the mental health fields, and have received validating reviews. As I say in my performance: I don’t have all the answers. I am here to challenge what you think you know about mental illness. The ignorance we have been fed is our only enemy. It is time to expand our views of how we treat emotional distress and psychiatric disability. We only have to step through the doorway. My story is not a miracle story, it is a story of blindness, ignorance, and dangerous science within the industry of psychiatry. I am fighting with every ounce of my soul to be a part of the paradigm shift that is so desperately needed. Variation equals evolution, and to deny that is to deny the advancement of the human race.
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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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