What It’s Like to Live With Schizophrenia
When mental health advocate and educator Elyn Saks was 16, she walked out of her classroom and into hell, convinced that the houses she walked by were sending her messages that she had to repent because she was bad. She felt intense loathing and fear during that five-mile walk. It was her first experience of psychosis. Saks’ first mental break, five years later, had her singing on the Yale Law School library roof at midnight. She spent the next five months in a psych ward.
Michael Hedrick, writer and photographer, was diagnosed with schizophrenia eight years ago. He had delusions about being a prophet and hearing secret messages over the airwaves. He even thought his psychiatrist had been hired by his parents to convince him he was crazy. He is now on a journey of self-discovery.
Esme Weijun Wang, writer, editor and mental health advocate, suffers from Cotard’s delusion, the belief that she is dead. She experiences extreme confusion and agitation during an episode, her own personal hell where, “everything including her mind, her insides and her outsides are on fire.” As she put it, “It’s an invisible, panic-driven torment.” Each of these individuals suffer from schizophrenia; each advocates for understanding and acceptance and change in how people view those with mental illness.
Just imagine being consumed with the idea that inanimate objects are judging you and telling you what to do. Imagine suffering from panic, extreme self-loathing or a feeling of being on fire. Can you even understand being convinced that everyone is out to get you, that the television is telling you that you are a prophet, but you are the only one who is able to understand the message, or that everyone else had the same delusions as you? Worse yet, can you comprehend what life would be like if you were told that you would never be able to live a normal life, with a normal job and all the things that others take for granted? This is just a taste of what it’s like to live with schizophrenia.
Elyn Saks: “A waking nightmare”
Professor Elyn Saks, author, Associate Dean and Orrin B. Evans Professor of Law, Psychology and the Behavioral Sciences at the University of Southern California Gould Law School, actively advocates for mental health awareness and individuals suffering from mental illness. When you suffer from schizophrenia, it’s difficult to distinguish reality from fantasy. In her words, “To me, the best analogy of what it’s like is that it’s a waking nightmare, where you have all the bizarre images, the terrible things happening, and the utter terror — only with a nightmare you open your eyes and it goes away. No such luck with a psychotic episode.”
When Saks was 16, she inexplicably left her classroom for a five mile walk home. She believed the houses were putting hostile and insulting thoughts into her mind. She felt intense loathing and fear, and it was sheer agony. This was her first psychotic episode, a full five years before her first schizophrenic break. The stress of attending college may have added fuel to the psychoses, and Saks found herself sometimes using “word salad” to express herself.
“As an example,” says Saks, “when I broke down during my first semester at law school I was saying to my classmates, ‘Are you having the same experience I am with the words jumping around the pages in our cases? I think we have to case the joint, but I don’t believe in joints, but I do believe they hold your bodies together.'” Basically, says Saks, they’re words that are connected, but that don’t make any sense when put together. Then, while attending Yale Law School, she was discovered singing on the law of the library at midnight. She was taken to the emergency room, tied to a hospital bed and spent the next five months in a psychiatric ward.
There are positive and negative symptoms to psychosis, where positive symptoms can include delusions or inexplicable false beliefs. “Sometimes I have the delusion that I’ve killed hundreds of thousands of people with my thoughts, or that someone has set off a nuclear explosion in my brain,” she told me. Hallucinations are another common positive symptom, though mostly auditory. Saks says she experiences the occasional visual hallucination, but not very often. Negative symptoms include apathy, the inability to hold a job or keep a relationship. During the early phases of her schizophrenia, she spent months in an institution, convinced that she could not longer take care of herself.
For the next few years, Saks entered treatment without medication, denying that she suffered from mental illness and refusing to take medication. It took a full decade of medication, therapy and the support of friends and family for her to realize that she was able to once again cope. They recognized when an episode was coming on. “My husband likes to say that psychosis is not like an on and off switch — it’s more like a dimmer,” she said. “At the far end of the switch — and I still experience this from time to time — I’ll have a transient thought that I’ve killed people with my thoughts. When that happens I’ll basically stand back and say, ‘Oh, Elyn, that’s just your illness acting up, pay it no mind.'” While she still struggles in social situations, Saks has learned to be around others for greater amounts of time, and she has learned to identify and avoid or cope with her stressors.
Michael Hedrick: “A devil on your shoulder”
Michael Hedrick was diagnosed with schizophrenia about eight years ago. He had delusions about being a prophet and heard secret messages on the TV and radio. He didn’t really suffer from hallucinations and, except for the occasional incident, didn’t hear voices. He began to feel that he could no longer make eye contact with others or go to the store without feeling the world was going to end. He was afraid of subtle body language – too much eye contact, how his feet hit the ground or how he held his hands. He saw signs in other people’s simplest actions.
Schizophrenia was “a devil on your shoulder who whispers nasty stuff in your ear and no matter what you do, he won’t go away. Eventually you learn to accept him as a kind of companion, albeit a companion you don’t like, but a companion nonetheless. It feels almost like a burden that you eventually get strong enough to carry. Baggage is an apt word.” He was a reporter, but his use of alcohol and weed to cope left him in a haze and he eventually lost that job and ended up in jail for DUI. His parents bailed him out and he has been on a quest for recovery since that point. He went into therapy and remembered his medication. It became a routine.
Hedrick is strict about his routine: taking his medication, getting enough sleep and staying healthy. He monitors his symptoms, knowing that when he feels sad or more paranoid that usual, he is experiencing stress and has to take time to concentrate on his self-care. Now, with time and medication, he finds that his symptoms have gone from “terrifying to manageable to mere second thoughts.” Eight years ago, he would have thought that laughter in a coffee shop was directed at him, that people were laughing at him. Now he can deny that thought and affirm that he is okay. Others may find his daily routine boring, but, like he says, it keeps him sane – “literally and figuratively.”
Esme Weijun Wang: “Off-the-charts level of confusion and agitation”
Esme Weijun Wang: has schizoaffective disorder that combines positive and negative symptoms with bipolar affective disorder. She also suffers from Cotard’s delusion, a rare, false fixation that she is dead. During psychotic episodes, she can become terribly confused and agitated. Recently, she shared this on her experiences with Cotard’s delusion, a rare, false and fixed belief that one is dead: “…[T]hat kind of off-the-charts level of confusion and agitation is often [in]visible to others. People who know me might be able to tell that something’s wrong, but not that I’m drowning in the idea that I am literally and inescapably in Hell.” She is in torment as she and the world around her is on fire.
When her own psychosis and the sense of unreality would stir, she would find herself trying reorganization and self-discovery to cope. Ritual would help, but it wasn’t a final solution.
“In the beginning of my own experience with Cotard’s delusion, I woke my husband before sunup. Daphne, our dog, stirred, began thumping her papillon-mutt tail against the bedsheets. I’d been in my studio, but now I was shaking my husband, and I was crying with joy. “I’m dead,” I said, “and you’re dead, and Daphne is dead, but now I get to do it over. Don’t you see? I have a second chance. I can do better now.” Chris said, gently, “I think you’re alive.”
She was convinced that he was wrong, she was right, and that, in death, she had been given a second chance to make things right.
Wang is aware of her condition every day of her life. She focuses upon taking her medication, participating in different forms of therapy, on eating well, getting enough rest and sleep and in avoiding stress. “I try not to become overly stressed – much easier said than done, I must say, but when your actual sanity depends on it, you really make an effort. I’ve made sure that I have a terrific support team that I trust. I’ve also become much more spiritual since the worst of it started.” Even when not suffering an episode, she fears becoming ill at any time. She is trying to work through the self-stigma. “I was raised to value my intelligence and my intellect, but that’s become an increasingly frightening thing to base my self-worth on as my disorder progresses. I remind myself that I am loved, that I am loving. I remind myself of my roles as a spouse, a dog mom, a sister, a friend.” Wang believes that she appreciates life even more now, and that it’s possible to live a good life with the illness. “You are still you.”
As Sara Rae wrote in her book, The Fog of Paranoia: A Sister’s Journey Through Her Brother’s Schizophrenia, “When a loved one suffers from schizophrenia, everyone loses something different, whether it was a best friend, a confidant, a sociology tutor, a ray of sunshine, or a dutiful son.” Her book details how her brother changed from an extrovert to a recluse, and how she suffered survivor guilt and a sense of helplessness and even anger at lost plans they had made as his condition deteriorated. As her own struggle with depression and suicidal thoughts took second place to finding help for her brother, the entire family had to come to grips with the reality of schizophrenia. While a testament to that loss of what once was, it also reminds us that while there is no miracle cure or easy out, there are still moments of connection as she struggles to help her brother while living her own life.
A person suffering from schizophrenia or any disease should not be defined by that disease. You are not schizophrenic, you suffer from schizophrenia, just as you are not cancerous, you suffer from cancer. Relationships and love are invaluable for all people, ill or well. Along with therapy and proper treatment, good friends, a job you enjoy, family and other relationships make life sweeter and worthwhile. The challenge is in finding what’s right for you.