These accomplishments would be impressive for any individual but are especially noteworthy given Saks’s lifelong struggle with schizophrenia, a severely debilitating psychological disease that causes victims to hear voices and believe others are plotting to harm and control them. During intense psychotic episodes that still reoccur to this day, Saks loses the ability to function, speaks in incoherent phrases, and is so paralyzed by fear she sits on the floor and rocks herself.
In a powerful new book, “The Center Cannot Hold: My Journey Through Madness” (Hyperion, 2007), Saks reveals her nightmarish struggle to overcome the disease and provides an up-close look at what it’s like to experience a psychotic episode. NEWSWEEK’S Julie Scelfo spoke with Saks about living at the mercy of a brain disorder. Excerpts:
NEWSWEEK: What’s it like to have a psychotic episode? ELYN SAKS: You’re overstimulated. You can’t tune things out and focus on what’s most interesting and important to you at that moment. You’re hearing sounds, you’re having memories, the traffic is going by, it’s just overwhelming. It leads to what I call disorganization: your mind is dissolving and you’re not able to compute all the stimulation coming in. The primary affect is terror and confusion. Then I end up having delusional beliefs that are very scary to me. I think I’ve killed hundreds or thousands of people with my thoughts. I think thousands of tiny men are trying to kill my brain. I lose touch with reality. Maybe the best way to describe it is like a waking nightmare. Everybody has probably had a nightmare and remembers sitting bolt upright in bed thinking “Oh my God, is this real or not real?” The same thing goes on but you’re awake.
One of the major themes of this book was your fight against being on medication. Oh God, that was a hard-fought battle. I just felt like if only I would try harder I could get off medication. That I just was a wimp. I also thought everybody had the same thoughts [about killing people and being attacked] as I had and I was just socially maladroit for not being able to hide them. I know now that’s not true. The thing that really changed me and finally forced me to accept I’d have to spend my life on medication was trying really hard to get off it, really trying, and then getting on a new medication that really made me feel better. Also psychotherapy helped.
What medication are you on now? Clozapine and Prozac. Clozapine is like the Cadillac of anti-psychotics. It’s cumbersome but it’s the best one we have. It is so risky that you have to have blood tests all the time to rule out a life-threatening blood disease that can be a side effect. Even though I continue to have some symptoms of schizophrenia, this medication is amazing—there are fewer episodes, they don’t last as long, and they’re less intense. A lot of new anti-psychotics are amazing.
Yes, but the side effects are intense. I was struck by the significant health problems you faced that may or may not have been linked to your medication, including a brain hemorrhage and breast cancer. Some people think elevated prolactin is a risk factor for breast cancer. Normal prolactin rates are around 13 or 14. People on the older anti-psychotics average 30 or 40. For a period of about five years I was running 140. Maybe that had something to do with breast cancer. Today, I’m in a support group at the Wellness Community in Los Angeles for cancer patients and survivors.
It’s clear from your book you not only had good health care but friends and family who were adept at managing and coping with your psychosis. Many people with schizophrenia aren’t as lucky, right? I say most of my success has been due to luck—to have supportive family and friends, to respond to medication and to have the resources to get proper care. There are a lot of people who have schizophrenia and bipolar disorder who do not have resources and can’t get help. Mine is a story of someone who did well with good treatment. One of the tragedies of our system is that most people don’t get the kind of help they need and if they got treatment, they could be much happier and higher-functioning.
Do you still have psychotic episodes? I do. They range from transient psychotic thoughts to intense episodes that last a few weeks. A weird thought will come to my mind and I’ll just dismiss it and say that’s my illness. Things that are stressful to other people can lead me to have a break. It’s hard for me to travel. This month I had house guests and was with people for two days straight, and then I was psychotic for a couple of days. The last time I had a severe psychotic episode was in 2001 when I was trying to change to a new medication and just totally fell apart. I was so delusional I believed my doctor, a pretty well-known guy, was taken over by aliens like invasion of the body snatchers. I said to him, “Are you the real Dr. Gitlin or the marionette?” He said, “I’m the real Dr. Gitlin,” and I said, “that’s just what the marionette would say.”
Are there degrees of schizophrenia? There are people who do better and people who do worse. There are several different types of schizophrenia. For me, when I have symptoms, when I am floridly psychotic, it’s pretty bad. But when I’m not in an episode, I’m very intact, I have friends, a husband, a job I love. I’m the version of schizophrenia that has positive symptoms like delusions as opposed to negative symptoms which cause [a person] to be apathetic, withdrawn and unable to function. That may be one reason I have been able to do well.
Why did you write the book? To give hope to those who suffer from schizophrenia and understanding to those who don’t. I hope to give a window into the mind of someone who acutely suffered from psychosis. It seems to me if people understand, they’re going to be less likely to be frightened, less likely to be hostile, and hopefully the stigma will decrease. Obviously the stigma is bad for a lot of reasons, including that it discourages people from getting help.
How did your colleagues respond to your memoir? About a month ago the book started circulating around the office and this person said I’m really glad I didn’t know you had a mental illness because I never would have gone out to dinner with you. In a way it’s stunning, but in another way I was glad she felt comfortable enough to tell me. The stigma is so powerful even good, and well-meaning people can’t always get beyond their fears.
