The Center Cannot Hold: My Journey Through Madness

by Elyn R. Saks

In fact, it is not necessarily true that everything can be conquered with willpower. There are forces of nature and circumstance that are beyond our control, let alone our understanding, and to insist on victory in the face of this, to accept nothing less, is just asking for a soul-pummeling. The simple truth is, not every fight can be won.

Schizophrenia rolls in like a slow fog, becoming imperceptibly thicker as time goes on. At first, the day is bright enough, the sky is clear, the sunlight warms your shoulders. But soon, you notice a haze beginning to gather around you, and the air feels not quite so warm. After a while, the sun is a dim lightbulb behind a heavy cloth. The horizon has vanished into a gray mist, and you feel a thick dampness in your lungs as you stand, cold and wet, in the afternoon dark.

Philosophy and psychosis have more in common than many people (philosophers especially) might care to admit.

I was desperate. I held my own life in my hands, and it was suddenly too heavy to be left there.

It was at this point, I think, that my life truly began to operate as though it were being lived on two trains, their tracks side by side. On one track, the train held the things of the “real world”—my academic schedule and responsibilities, my books, my connection to my family (whom so far I’d managed to convince, on a series of blessedly brief long-distance phone calls, that everything at Oxford was going just fine, thanks). On the other track: the increasingly confusing and even frightening inner workings of my mind. The struggle was to keep the trains parallel on their tracks, and not have them suddenly and violently collide with each other.

Not until that moment had I realized how much rage I felt, directed mostly at myself. It was as though I had been carrying a large sandbag on my back, and now some of the sand—just a little, but some—had been let out. And with my load just a bit lighter, maybe another kind of hard work could begin.

When you’re really crazy, respect is like a lifeline someone’s throwing you. Catch this and maybe you won’t drown.

Blinking and shaky (as though I’d been in a cave, and the light, as welcome as it was, was something I’d have to get used to), I began to move back into the world again.

Psychotic people who are paranoid do scary things because they are scared. And when you’re both psychotic and paranoid, it’s like that sweaty midnight moment when you sit bolt upright in your bed from a nightmare that you don’t yet know isn’t real. But this nightmare went on all through the daylight as well.

When my scrambled thinking revealed itself, they put me in the hospital version of “time out.” Where was the “treatment” in this? Were they wanting to help me get better, or did they just want me to be socially appropriate? Overall, the sole message they seemed to want me to get was “behave yourself!”

This is a classic bind for psychiatric patients. They’re struggling with thoughts of wanting to hurt themselves or others, and at the same time, they desperately need the help of those they’re threatening to harm. The conundrum: Say what’s on your mind and there’ll be consequences; struggle to keep the delusions to yourself, and it’s likely you won’t get the help you need.

One day, I simply refused to take the Valium. Staff held me down and gave me a shot. I later read in my chart that Valium is not effective when given by injection. It just doesn’t work that way. Even without knowing that, I wondered whose needs were really being met on this unit.

Schizophrenia tends to emerge at different times for men than for women. For men, the first “breaks” tend to happen in the late teens or early twenties. For most women, things begin to fall apart later, usually in the mid-twenties. But before the illness truly manifests, there is a stage—called the prodrome—when it slowly becomes apparent to anyone paying attention that all is not well.

Nothing had happened to me at MU10 that was encouraging or helpful; in fact much of what had happened was inhumane and ineffective.

it reflected what I’d been taught all my life: Intelligence, combined with discipline, could overcome any challenge. And mostly, that belief had served me well. The problem was, it assumed that the intelligence at hand was fully functional, fully capable—but I’d been told by experts that my brain had serious problems. Was my brain the same thing as my mind? Could I hang onto the one while conceding that there was a big flaw in the other?

It would take me another fifteen years to learn the lesson of what happened each time I withdrew from drugs. It had been much easier to learn ancient Greek, and not nearly as self-destructive.

One of the worst aspects of schizophrenia is the profound isolation—the constant awareness that you’re different, some sort of alien, not really human. Other people have flesh and bones, and insides made of organs and healthy living tissue. You are only a machine, with insides made of metal. Medication and talk therapy allay this terrible feeling, but friendship can be as powerful as either.

Sometime later, it occurred to me that at the very moment I was being tied to a bed in a psychiatric ward, screaming bloody murder and afraid for my life, Steve was singing Gregorian chant in a monastery overlooking the ancient city of Rome. And here we were now, come to the same place, from two very different directions.

Psychiatric patients always have someone (or a whole chorus of someones) telling them what they’re supposed to do. In my own experience, I had discovered that it was much more effective to be asked what I’d like, e.g., “If you could arrange things your way, what would that look like and how do you think we could help you get there?”

I wondered: How was that first diagnosis made, so many years ago? Who made it? And how many more Jeffersons were locked up inside places just like that—lost, or misdiagnosed, spending whole lifetimes waiting for someone to really see them and recognize them for who they were?

When I become psychotic, a kind of curtain (of civilization, of socialization) falls away, and a secret part of me is revealed. And then, after the psychosis passes, I suffer overwhelming shame: I have been seen. Now they know.

But the fact is, I didn’t die; I survived, and I told myself that fact every single day. It’s a little like having a meteor land in your backyard without hitting the house. You can either focus on the meteor, and what almost happened, or you can focus on the fortunate miss and what didn’t happen.

My brain was the instrument of my success and my pride, but it also carried all the tools for my destruction. Yes, the pills helped, but each time I put them in my mouth, it was a reminder that some people—smart people I trusted and respected—believed that I was mentally ill, that I was defective; every dose of Navane was a concession to that.

Who was I, at my core? Was I primarily a schizophrenic? Did that illness define me? Or was it an “accident” of being—and only peripheral to me rather than the “essence” of me? It’s been my observation that mentally ill people struggle with these questions perhaps even more than those with serious physical illnesses, because mental illness involves your mind and your core self as well. A woman with cancer isn’t Cancer Woman; a man with heart disease isn’t Diseased Heart Guy; a teenager with a broken leg isn’t The Broken Leg Kid. But if, as our society seemed to suggest, good health was partly mind over matter, what hope did someone with a broken mind have?

Kaplan sometimes said that I had a Republican superego when it came to mentally ill friends. I’d pushed myself for years; that pushing had helped me survive. So I wasn’t yet ready to allow for someone else what I could not allow for myself.

Dropping in and out of your own life (for psychotic breaks, or treatment in a hospital) isn’t like getting off a train at one stop and later getting back on at another. Even if you can get back on (and the odds are not in your favor), you’re lonely there. The people you boarded with originally are far, far ahead of you, and now you’re stuck playing catch-up.

The gaps in your life—how do you explain them? You can always make up stories, but beginning a friendship with a lie about your life doesn’t feel very good. Or you can say nothing about how you’ve spent the last few years, which strikes people as odd. Or you can choose to tell them about your illness, and find out the hard way that most people aren’t ready to hear about it.

because psychoanalysis asks fundamental questions: Why do people do what they do? When can people be held responsible for their actions? Is unconscious motivation relevant to responsibility? And what renders a person not capable of making choices?

I knew full well that the stigma that travels with mental illness could trip me up one of these days, but I certainly wasn’t going to collaborate in my own “demise” if I could help it. Even Congress recognized the potential for the damage, when it passed the Americans with Disabilities Act, which prohibits employers (and schools) from even asking about a psychiatric history.

While medication had kept me alive, it had been psychoanalysis that had helped me find a life worth living.

The most profound effect of the new drug was to convince me, once and for all, that I actually had a real illness. For twenty years, I’d struggled with that acceptance, coming right up to it on some days, backing away from it on most others. The clarity that Zyprexa gave me knocked down my last remaining argument.

Ironically, the more I accepted I had a mental illness, the less the illness defined me—at which point the riptide set me free.

When you have cancer, people send flowers; when you lose your mind, they don’t.

It occurs to me that there are often two sets of trickery going on in my life. The illness—the entity—is always just off to the side, just barely out of my sight. But I know it’s there. And it tries to trick me into believing this isn’t the real Will, this isn’t the real Steve, that reality isn’t reality, that I can kill thousands of people with my thoughts, or that I’m profoundly evil and unworthy. At the same time, I’m trying to trick the people around me. I’m OK, I’m functional, I’m fine. And maybe, sometimes, this determined effort to trick them tricks the illness itself.

However, people with thought disorders do not keep a list of famous and successful people who share their problem. They can’t, because there is no such list. Comparatively few schizophrenics lead happy and productive lives; those who do aren’t in any hurry to tell the world about themselves.

She then said something that made me think: “But, Elyn, do you really want to become known as the schizophrenic with a job?” I was taken aback by her question. Is that who I am? Is that only who I am?

I needed to put two critical ideas together: that I could both be mentally ill and lead a rich and satisfying life. I needed to make peace with my demons, so I could stop spending all my energy fighting them.

Recently, however, a friend posed a question: If there were a pill that would instantly cure me, would I take it? The poet Rainer Maria Rilke was offered psychoanalysis. He declined, saying, “Don’t take my devils away because my angels may flee too.” I can understand that.

What I rather wish to say is that the humanity we all share is more important than the mental illness we may not.

If you are a person with mental illness, the challenge is to find the life that’s right for you. But in truth, isn’t that the challenge for all of us, mentally ill or not? My good fortune is not that I’ve recovered from mental illness. I have not, nor will I ever. My good fortune lies in having found my life.