What It’s Like to Live With and Recover From Psychosis
Some of us are readers of fiction, and some of us prefer non-fiction. I fall into the latter camp. I have always marveled at people who like stories and especially those who can create stories. Stories never really appealed to me because my mind is more pragmatic, analytical and prone to analyze. And for the life of me, I simply have no ability to create a story. It just does not come naturally to me.
But then, the stories came pouring out of me like a torrential rainfall. My imagination conjured up one story after another — stories that were dark and haunting, and stories that made me feel on top of the world. But I paid a price for suddenly being able to develop these stories in my mind. I could no longer distinguish reality from the inventiveness of my mind. I began to believe the stories just as one loses themselves in a good book. To get into a story, you need to suspend disbelief — and that is what I did. It was not so much I believed the stories as a true statement about life, but rather I suspended disbelief. I failed to ask: could this be true? Is it possible? Or is this outlandish?
My stories were indeed products of my imagination. I imagined my home being broken into, being nominated for a Nobel Peace Prize or fleeing persecution by organized crime. I reimagined my life story and that of my ancestors. I came to believe that my mother’s family for generations were a part of the white resistance movement in the Deep South, or that my father’s family were a part of the German resistance movement during World War II. As a child, along with my father, I participated in sting operations with the FBI to bust up a domestic ring of pedophiles. From there, we expanded our efforts to bust up an international ring of pedophiles located in South America, Europe and Northern Africa. I imagined there was a network of secured phone lines in downtown Minneapolis that were directly connected to the White House, which my family had access to in order to communicate important information. I imagined I was related to the Roosevelts and Harrison family on my mother’s side and Golda Meier on my father’s side. I fancied myself receiving Golda kisses from our family physician whenever Dr. Goldstein came over for a visit when I was feeling ill with the flu. He would pass on Golda’s get well message — a peck on the check. I imagined my mother’s family is directly related to Theodore Roosevelt Sr. and William Henry Harrison, the 9th president of the United States. I had the droopy upper arms of a Roosevelt woman which was proof positive that I was related to Eleanor Roosevelt.
Because I did such dangerous FBI work as a child, I was assigned an FBI case manager to help protect me from being killed. There was a target on my back. Anyone who shot me by placing the barrel of a gun into my left side and pulled the trigger, leaving a red circle, would receive money for the hit. I escaped death so many times that I lost count. The FBI would tip me off. I also had an uncanny knack of detecting dangerous situations. As I ventured into young adulthood, the nature of the killings became increasingly dark. I was either targeted to be raped, kidnapped, shot, tortured or set on fire… or a combination of them. But I always escaped.
I was a member of the Jefferson program. This program selected young political talent among the direct descendants of Thomas Jefferson. Each Jefferson program selectee was given a pool of financial resources and extensive networking contacts in Washington, D.C., such as a White House liaison. These resources were provided in order to work on my chosen political issues. At the age of 8, I selected working on marriage equality for the LGBTQ community. By the time I was 53, I was supposed to be nominated for a Nobel Peace Prize when the US Supreme Court upheld marriage equality, but I was not notified because the Nobel committee could not find me. I was in a locked psychiatric unit of a hospital. No one knew my whereabouts since my admission was confidential.
My stories were delusions — imaginative false beliefs that were contained in stories I told myself about my life and my family’s life, spanning many generations. This is what it is like to be psychotic — to be lost in a conflagration of fictive stories that left me unable to socially function like others in society… to hold down a job, support myself or to safely parent my child. I lost my life for 10 years. I lived in a homeless shelter for four years and then subsidized housing for another five years. I spent my days at the library, like so many others in our country who are mentally ill and/or homeless. At the Minneapolis Public Library in downtown Minneapolis, they have four floors of computer stations. I would estimate that over 70 percent of the computers are used by people who are seriously mentally ill and who are homeless or receive subsidized housing. People with serious mental illness are found cycling in and out of jails, hospitals, emergency rooms, shelters and the library. Serious mental illness, untreated, destroys lives.
I am an ardent supporter of the recovery movement for people with serious mental illness. The recovery movement offers hope that recovery is possible. Recovery varies from person to person. For some, it is complete remission of mental illness symptoms; for others who may be treatment resistant, it is actively managing the symptoms so that a better quality of life is attainable. For some, recovery may include work for others; it may be volunteering at an organization that supports their passions. Recovery may mean reconnecting with family and lost friends, or it may mean creating new connections with new friends. There is no given recovery path; rather, it is something that is chosen, something that one believes in and something that one does.
Compared to the historical treatment of people with mental illness, recovery is a radical modern concept. We have advanced from the days where people with mental illness were kept in windowless dungeons, beaten and chained to their beds. Historically, people living with mental illness received curative treatment of bloodletting, lobotomies and exorcism. Mental illness was believed to be caused by demonic possession, witchcraft or an angry God.
Today, mental illness is understood to be largely a result of biological processes that are not working properly. Beginning in the 1950s, when antipsychotics were first discovered and implemented as a form of treatment for people with psychosis, the view toward people with mental illness began to change. Now it is understood that mental illness is a medical problem with medical solutions. This is the prevailing view with new medicinal and therapeutic treatments available on an ongoing basis.
If today is the recovery philosophy of care and treatment, what will tomorrow bring? With further scientific research, we will perhaps come to understand mental illness better as more akin to a chronic illness like diabetes and be able to offer effective targeted treatment that reduces the negative consequences of side effects. Along the way to a better tomorrow, people need to have access to evidence-based treatment, whether that is state of the art medicines, dialectical behavior therapy (DBT) treatment or peer support services. We need to educate and persuade lawmakers that continued and increased funding for evidence-based treatment will have an overall net effect on saving money for society.
Today, I am proud to say, “I have psychosis and I am in recovery.” My psychosis is not “weird” or dangerous; rather, it is a collection of imaginative and fictive stories I believed to be true until that day I started to take an antipsychotic pill and realize — whoops! None of that was true. And when that happened, I felt relief but I was also disappointed. You mean I was not a Nobel nominee or a special person in God’s eyes, with a special mission? No, I am simply myself. Rather than saving the world, I live a more modest life of working for a non-profit advocacy and education organization with a focus on promoting recovery for people living with mental illness. I address real problems by real people in real need of help and support, and that is enough to live a meaningful and productive life. Recovery is possible — make it happen in your life.
Editor’s note: Please see a doctor before starting or stopping a medication.
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