Throughout my life, even as a child, my desire was for independence and dignity. I have always wanted to make my own choices, from what I eat and wear, and where I live, to who my friends are, and even who I vote for.
But when a severe, treatment-resistant form of schizophrenia interrupted my young life, an involuntary hospitalization took away much of my independence, dignity, and freedom. I had been a college student, but found myself in a small room on a psychiatric ward shared with a roommate. Though I liked her, she was not a friend I normally would have sought out. I was told I had schizophrenia but did not believe it. What I did know was that I did not want to associate with a roommate who was “crazy.”
Fortunately, there were many perks to my first hospital in Los Angeles. Unlike many facilities where going outside is impossible, this hospital had a beautiful enclosed courtyard with a lawn and trees. I remember going there before I went to bed to see stars while chatting with a staff member. The hospital day room had a window covering most of the wall looking out into the courtyard. Outside, there was a ping pong table, and I played often with the security guard, who felt like a friend. I admit, the food was excellent. I was hospitalized over St. Patrick’s Day, and there was a party outside with ice cream. I remember going to a party in the day room, where people were dancing. There was even a piano, which I enjoyed playing.
I didn’t realize what I had. Rather than appreciating the facility, I felt like a hamster confined to a cage and badly wanted to get out, wishing I could be homeless again and freely walk the parks every day as I was accustomed to. What I really wanted was what I perceived to be the dignity and independence of homelessness.
Unfortunately, this would not be my last hospitalization. After my first hospitalization, I quickly discontinued my meds due to side effects and rebounded into full psychosis, leading to my second hospitalization, which was in the Cincinnati area. In Cincinnati, there were very limited opportunities to go outside, and the views from the windows were dismal. Fortunately, this hospitalization only lasted about four days.
Several months later, my psychiatrist dropped me as a patient because I was “too complicated.” With nowhere to go to find help, and after four visits to the emergency room with my very patient dad, I was admitted again for about one week.
This last hospitalization was much different. I knew I needed to be there and had signed in voluntarily. I only wish my outpatient psychiatrist had kept me his patient long enough for me to secure an appointment with my next psychiatrist, which would have prevented my last hospitalization. I also wish all my hospitalizations had been in the facility in Los Angeles.
Today, celebrating my full remission from schizophrenia over 17 years, I look back with gratitude to the time I was involuntarily hospitalized in Los Angeles and see it as a positive and necessary step in my life—perhaps my very first steps toward recovery. I hated it, just as I hate going to the dentist, sitting for exams in subjects that do not interest me, or even breaking up with a boyfriend who was not right for me after dating for some time. These are difficult things in life, but we get through them because we know there will be benefit in the long run, and the discomfort and inconvenience will be worth it when we finally see the positive outcome. Thanks to the decisions made during my hospitalization and medication, I was able to find and maintain true and healthy independence and dignity.
In my work as current president of a nonprofit that serves the schizophrenia community, I often see this challenge—when it is appropriate to deny a person some of their independence and even dignity for a while when they may hate hospitalization, as I did, but still badly need it?
I also think it is imperative that hospitals, legal guardians, and even involved family members try their best to take away as little independence as possible and endeavor to help a person maintain dignity. One way to offer someone the most independence comes through simple but targeted and goal-oriented conversations. During my second hospitalization, I asked the doctor for a highly effective antipsychotic medication that I had heard about. When he listened to me, took my suggestion seriously, and prescribed that medication, I felt satisfaction, as though he was on my side. When this medication did not work, I soon met a new psychiatrist named Henry Nasrallah, who spent countless hours speaking with me, asking about my goals and dreams. He did everything in his power to help me regain an independent life and dignity. I soon moved out of my parents’ home and lived in the University of Cincinnati area, enrolling in college again, and graduating two years later.
Other ways to help a person keep independence and dignity are to visit them in the hospital, bringing them food, books, clothing, music, and any special thing they may want that is allowed. I wish every hospital had a courtyard, a ping pong table, and a piano.
Doctors must also take the time to explain the diagnosis and why medications are necessary. When making plans for discharge, it is important to listen to the person. Personally, I wanted to resume living homeless in Los Angeles after discharge, which I was not allowed to do, but I still felt my parents were taking my wishes seriously. Try to include them in the conversation about where they will live, how they will spend their time, and, of course, always involve them in medical decisions that will facilitate recovery.
Today, I am thankful I lost my independence and dignity for a time because of the positive outcome. It was miserable to live through, but hospitalization led to the healthy and treasured life I enjoy today. And I thank the treatment team at my Los Angeles hospital for doing an especially good job.