I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia. For decades I’ve lived, along with almost three million other people with schizophrenia, in a desolate, dark, little room with a large padlock on the door. The room is stigma. The darkness is fear. And the lock is ignorance. I want to speak to you today, having had schizophrenia for decades, to break down the walls of fear and suspicion, unburden you of the myths and mysteries that lead to stigma, and get you to open that door.

I’d like to tell you some reasons why medication compliance is such a difficult issue in schizophrenia, and a little bit about how I began to recover. Medication. What a struggle. I was never going to take medication. Medication meant I was sick. I hated that label. I hated the very idea of a label. But I hated the side effects most. Never mind what medication did for me. I hate what it did to me. For starters, there was dullness, deadness, lack of motivation, feelings of impending doom. Then, not being able to swallow my saliva, overwhelming sedation, a 60- to 70-pound weight gain, drooling or dry mouth, stiffness or shaking, agonizing internal restlessness, movement disorders. Need I go on? Well, given all that, what would you do? Time after time, I stopped taking first one pill, then another and another. Predictably, I became psychotic again.

People with schizophrenia are faced with this all the time. Either they stay psychotic, or they suffer side effects that can sometimes be as bad or worse than the illness. If you know someone who has been psychotic, you’ve seen what a horrendous state it is. So this might seem hard to believe. How could side effects, mere side effects, be worse than psychosis? In fact, sometimes side effects can be life-threatening. And then the medication has to be stopped, even when it works. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help. The right medication can help, though, and when the side effects are at least tolerable, it can make the difference between chronic illness and recovery. I wouldn’t be standing here today without it. Tolerable, though, is the operative word. I don’t have to believe my pills help me. I promise to take them anyway. If I didn’t feel that they were more harmless than harmful, in other words, if the side effects weren’t tolerable, I couldn’t have made that promise to begin with. But medication compliance is iffy for other reasons as well. Some take medication until they feel better, then stop it because they feel better, only to get sick again. This sets up a destructive cycle into which they often have little insight.

Other people with schizophrenia do not believe their difficulties constitute an illness. If the CIA and FBI control me through a microchip implanted into my tooth, how will a pill solve that? If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how is medication even relevant? The solution is obviously to get rid of the radio in the wall, or go to the Middle East, find 22 linguists, and translate grey, crinkled paper. I asked my dentist about the tooth. For a moment he looked taken aback, but he regained his composure and answered with something like, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.” He was a pro. The technician, on the other hand, passed over a tray of probes, then backed a safe distance away. From that appointment on, she made sure I was sequestered in the last cubicle as soon as I arrived and made me stay there instead of the waiting room. Stigma. Did you know that stigma originally meant the brand from a hot iron that they would burn into a wrongdoer’s face as a mark of shame? That’s why many young people won’t take medication—because it sets them off from their peers. It brands them as different. But all of us with schizophrenia are stigmatized when people mock mental patients, or schizos, or imply that we are ax murderers just waiting to happen. The effect of ignorance is the stigma that keeps us locked away where no one has to see or acknowledge us. Out of sight being out of mind, the mayors can clean city streets of us and put us away in shelters, supposedly for our own good, or imprison us for minor infractions and lower the crime rate. But someone needs to stand up and ask where we’ve gone. Have we been sheltered or imprisoned? Have we been helped or just hidden?

Side effects, lack of insight, stigma—any and all can lead someone to stop taking medication. And compliance is almost always necessary for recovery. Talk therapy is crucial anyway. People used to think, “Oh, schizophrenia—just give them some pills and that’s as good as he’s going to get. He doesn’t need to talk to a therapist. Why, talking might even be bad for him.” This sort of mentality helped no one. People with schizophrenia are often frightened and lonely. At the very least they need someone to talk to. But discussion can be even more profitable. My own doctor tells me time and again that I have an illness, a brain disease. She insists that hallucinations originate in the brain, and that delusions are not real just because they feel real. I still need to hear this. And it has taken years to sink in, even in part. She always treats me not as a schizophrenic, but as a person, a full and complete human being with an illness that just happens to be called schizophrenia. This is important. We don’t call a heart attack victim a “cardiac,” do we? Or a person suffering from meningitis, another brain disease, a “meningitic.” No illness is all there is to a person. No illness erases the human being inside.

In September 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had third-degree burns, skin grafts, the whole terrible shebang. February 2005—in the hospital again. I had been admitted to psychiatric units many times by then for a total of at least eight years. This time voices ordered me to burn the rest of my body. That was it. I’d been tied down, locked in, shot up, and kept inside for the last time. I had to decide—live or die? One evening Lynnie visited. She was tired of it all, too. She said, “Listen, this is what I tell my patients. You can always go down the old, familiar road. You’ve taken it a million times. Why don’t you try something new, just for a change?” She called this “bushwhacking.” I could always switch back to my old way. It was always there and always would be. But bushwhacking, a brand-new path for myself, might bring me somewhere I liked better. It’s still a mystery to me why this took when nothing else had so many times before. Maybe I just had to be ready to hear it. I decided I would try her advice. What did I have to lose?

My newly bushwhacked path was to follow the doctor’s orders and take every one of the medications prescribed me as prescribed without skipping a single dose—for a while at least—see where that got me. After more than three decades of illness, recovery is still new to me. I didn’t expect it, and it still takes me by surprise to be able to say, “No, I don’t hear voices very much anymore.” A lot of life passed me by in 35 years. After all is said and done, I have to realize that I am a 53-year-old on the outside, but an adolescent inside, and I have some growing up to do. Hard as it sometimes is, I’ve chosen life, and that means I go on, no matter what. Still, when I look back, I don’t know how I survived all those years.

I tried many times to avoid living. I tried to become a statistic. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness. It made a life’s worth of difference. Life is for living. Today is all we have and all we know. Enjoy what you enjoy. When you suffer, suffer well. Remember, it’s all in the wrist. Those are not bad lessons, and you can learn them from the same people you keep locked away in that dank, little room. We have so much to teach you. That’s what I mean, you see. Don’t leave us in the dark. Wondrous things can happen when the doors open and the walls come down. Thank you. [new speaker] I’m warning you. I’m not going to make it through this one. In the early 20th century, an 18-year-old girl, showing symptoms of a dread disease, was sent far away from home. She would never see her family again. She may have died from this disease, but not until many lonely years had passed. The affliction was leprosy, and there was no remedy. For millennia, no disease was more stigmatized, more feared. Lepers and those merely thought to be lepers were publicly shunned and legally exiled to colonies to protect the rest of the community from infection. This may or may not have been justified, but the cruelty with which they were handled makes one certain medical quarantine was not the only motive. Where stigma is involved, it never is.

During the book tour for Divided Minds, in the lobby of a public radio station, I quickly recognized the face of a columnist, well-known for his satiric angle on political issues. I nodded hello, and sat down. He asked to see our book and, after he read the title, he peppered me with questions. I told him that Pam had been in and out of hospitals. He looked over at my sister, who sat next to me but wasn’t talking, and he watched her as she ran her hands nervously over the top of her thighs. Turning back to me, he asked about medications and did she take them and had she had shock treatments? I started to give him my usual explanation about electroconvulsive therapy and Hollywood when he interrupted, “Does the title mean you both have schizophrenia?” I told him what the book was about, and this man who had been eagerly engaged in conversation abruptly went silent. A moment or two passed, and then he said in a quiet voice but unashamed, “My mother had schizophrenia. They put her in an institution for 35 years. I never knew her.”

Patients with schizophrenia and leprosy don’t fit our Norman Rockwell picture of American society. Their lesions, their behaviors, are odd, ugly. They disturb our superficial harmony that we work so hard to maintain. Leprosy is now curable with antibiotics, but schizophrenia defies both precise definition and cure. In the 20th, and now 21st, century we still treat patients with schizophrenia like lepers. We may not exile them to island colonies, but we relegate their illness and treatment to a lower status. We treat them as dispensable, especially when money is tight. And when, I ask, is that ever not the case? But, to paraphrase the Bible, one part of the body can’t claim superiority over another. The eye can’t say to the finger, “I don’t need you.” The ear is just as much a part of the body as the knee. Just so, parts of the social body, that is society. We can exile lepers, we can shun people with mental illness, but we are incomplete without them. We may not see them, but we are still handicapped without them, still wounded. Isn’t it better just to keep the part and try to heal it and learn from it than to simply cut it off?

This is what organizations like NAMI, Fountain House, and Community Partnership of Southern Arizona are all about—helping patients recover their self-respect and reconnect with their communities. People ask me what’s it like to be a psychiatrist and have a twin sister with schizophrenia. Fifteen years ago, a friend of the family took me to a meeting in the basement of a church in southwestern Connecticut. After coffee and introductions I spoke to the group about schizophrenia and about my twin sister, Pam. Pam, older by five minutes, was brilliant, creative, and had a gift for writing that had been recognized as early as elementary school, while I had been slower to develop, shyer, and during our childhood had seemed more fragile. And Pam had been expected to lead, so I kept myself safely in her shadow. She was supposed to have become a physician, but instead she’d spend decades suffering the ravages of psychosis and had been in and out of hospitals for years. Meanwhile I took her place in medical school, became—got married, started a career as a psychiatrist. I knew Pammy was desperately ill. I recognized all the symptoms of schizophrenia, but I was her sister, not her doctor. What could I do? In those days, members of the family were not only discouraged from talking to her psychiatrist, we were rarely allowed any contact at all. Even though I was a psychiatrist myself and sometimes knew the treatments better than her resident doctors themselves, I felt like I was the enemy.

Confused, I turned to that meeting of families 15 years ago. It was the first time I’d ever spoken publicly about my sister’s schizophrenia. I cried. The others cried. The woman, the friend who took me to that meeting, died unexpectedly that summer. I never went back. I should have. Instead I waited until this book came out before I started speaking out in public—in a public setting—again. Now, talking about the memoir, about schizophrenia, about my feelings about Pam and the illness, about schizophrenia, about what it has done to her, to me, about what schizophrenia has done to our family has been the most liberating experience imaginable. It has not been easy. Pammy didn’t ask for schizophrenia. But she’s had to deal with it for over 30 years. And so have I. For too long I have tried to deal with Pammy’s illness alone, shielding my family from most of the disturbances, inconvenience, and care. After 2000, after the year 2000, all this changed, and even more so after the publication of our memoir. Schizophrenia is no longer a taboo subject in our family. We talk openly about Pammy now. I am mute no longer. Schizophrenia is a fact of my life and theirs. It may not be fun all the time, but the more you know about schizophrenia, the easier it becomes.

Schizophrenia has the power to destroy brain tissue, yes, and with it, much cognitive and other functioning. But schizophrenia’s power to destroy a person, a relationship, a family is only as great as we allow it to be. It almost destroyed our family—almost. Why? There are a myriad of reasons. Back then, in the beginning, no one in our family understood Pammy was psychotic. When someone is accusatory and bizarre, it’s very difficult not to take it personally, even if you know the person is psychotic. If you don’t, it’s almost impossible. In the ‘70s, there wasn’t much to be done for schizophrenia except a few barely tolerable antipsychotic medications and hospitalizations that Pammy will tell you were more harmful than helpful. Pam’s journey, my journey, our journey is shared by everyone of you, ill or well, whether the disease is schizophrenia, Alzheimer’s, depression, Parkinson’s, bipolar, or one of the many other neuropsychiatric disorders. Our journeys differ only in the details. We’ve all been through the highs when we think, “This is it. This time we’ve got it beat. No more relapses. No more dickering with the damned medication.” We’ve all felt the gut-wrenching, 10-story free fall at 3 a.m. with the phone call from the police, the neighbor, or the ER. We all, too, know the sleepless nights; the fists into the pillows, the walls, or the dashboard; the missed school, the conferences, the games; or the angry calls from the coach, the sitter, or the spouse who had to take up the slack one more time and doesn’t understand your depression or believe the story about your depressed kid, brother, or wife. And every single one of us has known discouragement, frustration, rage, and the black wall of despair. And, finally, each of us can remember deep inside how close we have come to giving up, maybe more than once.

So what’s it like to be a psychiatrist and have a twin sister with schizophrenia? It’s been hard sometimes for me to feel so alone. When things are good with Pam, you tend to forget the bad times. It’s a little bit like being in labor. Yet sometimes I think my being a psychiatrist has helped Pammy get better treatment than she might have had otherwise. And also I think she has learned some important things about her illness from our talking it through all these years. But when Pammy is raging and accusatory, it doesn’t feel delusional. It feels mean and unfair and intentional. Mostly it makes me want to fight back. And yet I don’t because I know it isn’t any of those things, and I know it isn’t Pammy. It’s schizophrenia. What I hate most about schizophrenia in my life is that it makes me have to stay in control all the time. I have to take the hurt of her psychosis over and over and over, swallowing my own rage. But I also know that when she is paranoid that she feels 10 times worse and that she is terrified of everything. So Pammy asks why I stay. I stay because I know she doesn’t mean to hurt me. I stay because I love her. I stay because I love having her in my life. Ill or well, I stay. I hate what schizophrenia does to her and to me, but despite her fears, it’s only schizophrenia that I hate.

When I wasn’t sure I could keep her going, when I wasn’t sure I had enough energy to keep both of our heads above water, when I wasn’t sure she really wanted me to, I couldn’t give up the hope that it was worth it, the glimmer of hope that she would get better someday. But, remember, all glimmers of hope are hope. Just as all drops of water are water. And hope, dreams, and billions in neuropsychiatric research are bringing us out of the dark ages of blaming mothers for causing schizophrenia and the back wards of chronic mental illness. And it’s because of hope, dreams, and neuropharmacologic research that has brought a sea of change to the treatment of psychiatric disorders. And illnesses that used to lead to a lifetime in hospitals now can be completely treated and kept in remission. Where once there was despair, there is now hope and a door to a full, normal life.

Remember, until this year, Pammy was in and out of hospitals more than 60 times. In her entire adult life, until we started the book tour, she had never eaten in a restaurant better than a diner, had never stayed in a hotel, had never tolerated a crowd, except crowded psychiatric units, and public speaking—well, she’d given poetry readings to tiny audiences, but speak before a crowd like this? Remember, hope, dreams, and neuropsychiatric research, a lifetime of treatment, and a network of friends, family, visiting nurses, dedicated case workers, therapists, helpers of all kinds—Pammy stands here today on her own two feet as well as she has ever been. A year ago I thought I might lose her. Trust me, miracles happen.