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I shared with all of you the harrowing experiences of my first psychotic break with schizophrenia this past summer 1998 in a previous issue of NYC Voices. I had asked then, "Where Do I go From Here?" Six months later I can offer myself some answers to that question, but first I must explain why it is difficult for me to live with schizophrenia even now. Though I've come a long way since my hospitalizations, I still have a hard road to travel. I'm 23 years old. I don't want to tell people I have schizophrenia when I don't have to. But if I don't reveal it to people who are a part of my life, I carry a terrible burden. I fear the shame I might bring upon myself for having this illness, but people did not make me feel ashamed when I shared my story at the 14th Annual Schizophrenia Conference at Columbia University on May 1, 1999. And I was not embarrassed to speak at a NAMI meeting in Westchester County recently. Sure, I spoke to people who were interested in learning more about my disease, but the whole point is to realize that millions of people out there suffer from schizophrenia or have loved ones suffering from mental illness and they need to hear from courageous people who are willing to share their experiences. I also shared my experiences with a class of psychiatrists and on a separate occasion with social workers. They need to know how it is to be a young person living with schizophrenia when the new medications manage the illness as well as they do.

It's really hard to live with this disease even when it's being managed by medications because one of its main symptoms are "delusions." Often I need to question what is real or delusional. I was waiting on the street for a bus in the Bronx one night, not too late at night -- about 9:30 p.m. And there was a lot of activity in the area. But the feeling of being the only white kid on the street suddenly came over me, making me feel alone and vulnerable, maybe even a target. I became uncomfortable. On the bus I thought a man was looking at me with angry eyes. I later asked myself, "Is this normal or is it the disease?" Is it reasonable for a lone "white" kid to be afraid at that hour on that street or is it schizophrenia? That kind of confusion is hard to live with.

Since I've been diagnosed with this illness my parents want to have more control over my life than I want them to have. They don't really trust that I'm taking my medication after I do something they perceive as irrational. If they panic, I'm not comfortable with the idea that they can have me put away in a hospital. Why should I suffer for their insecurities? Imagine how it would feel to be someone living with a mental illness who faithfully takes his medication, but is one day forced into an ambulance by EMS workers and driven to a hospital. You'd feel great anger and humiliation after your rights have been violated. Recently I had some back pains that kept me up for hours when I needed to sleep. I thought that getting some fresh air might help. The persistent back pain made me irritable which was why I did not bother telling my father that I was going for a walk to relieve the pain even at 3 o'clock in the morning. I just left the house with the door slamming behind me. I hate having to tell my father everything I am about to do, but that is the pattern I've gotten into these past months since my first break.

When I got home about a half hour later my father was upset and grilled me with questions I did not want to answer. I just wanted to be left alone to deal with my back pain. While I was gone he called my mother and she called my sister to find out where I was since we all live in the same neighborhood. My parents assured me that they were worried as much as they were because I did something irrational and because they loved me, but I know they worried a lot more because I have schizophrenia. I really don't know what to do about this very serious situation except to move out and find affordable housing away from them. I can't change the fact that I have schizophrenia. I take my Risperdal daily, but I can't expect my parents to believe it. My parents are decent parents but I know when they don't trust me. Since I have this disease, my parents won't treat me like the 23-year-old man that I am, but like a child. Despite the difficulties surrounding my illness, "Where Do I Go From Here?" is not such a profound question anymore. With surprising swiftness, I have recently become NYC Voices' Managing Editor and a Consumer Advocate so I will go wherever these new responsibilities take me while continuing the efforts to destigmatize schizophrenia by revealing my personal story to as many people as possible.