Awakening Isn't Always Enough

Pamela Spiro Wagner

     The clinical picture of schizophrenia is often described in terms of "positive" symptoms -- meaning hallucinations and delusions, symptoms that are present but should be absent -- and "negative" or deficit symptoms, like apathy, flattened emotions, and lack of motivation and drive.

Traditional neuroleptics are more or less effective with regard to positive symptoms; indeed, it was only when patients that had been severely agitated and out of control were effectively "tranquilized" that deinstitutionalization, for good or ill, was even possible.

Negative symptoms, since they generally resulted in more "manageable" patients, never seemed to be as much of a problem until it became clear that "wonder-working" drugs like Thorazine were not bringing about the miracles of rehabilitation that had been hoped for. Patients, though now quieter, were often still clearly disabled, often unable to care for themselves or function in society. What was so different about Clozaril, the first of the "atypical antipsychotic" drugs to be released in the U.S., was that reportedly it alleviated negative symptoms as well as positive ones, leading to renewed hopes that for the first time it might be possible not merely to empty mental institutions by dumping patients out on the streets, but to restore reasonable functioning even to those who'd been severely incapacitated for years.

In fact, although improvement, even in treatment-refractory schizophrenics, was anticipated, what happened was totally unexpected, according to Yale professors Kathleen Degen, M.D. and Ellen Nasper, PhD. who relate in their book RETURN FROM MADNESS how, Lazarus-like, some patients taking clozapine have experienced an "awakening," becoming for the first time in decades almost completely symptom-free.

Patients describe their experience of illness vividly; "I was just a vegetable" said one; another, while actively ill, had "felt like a nonhuman." Now, often for the first time in their adult lives, recovering patients have a sense that there is a life for them to live; some have managed not only to leave the hospital environment and live independently, but also to attend school or return to the workplace.

And yet, as Degen and Nasper report, not all whose symptoms improve are able to successfully re-enter "normal" society. This itself was unexpected, because, after all, the thinking went, if someone was no longer
incapacitated by hearing voices or delusional thinking, nor by negative symptoms like apathy and asociality, what would prevent him or her from achieving complete rehabilitation?

      Since 1991, when Clozaril was first approved, Degen and Nasper have worked with clozapine-treated patients at the Greater Bridgeport Community Mental Health Center in Connecticut. The subtitle of RETURN FROM MADNESS neatly encapsulates their argument, which is an eloquent statement on behalf of  "Psychotherapy with People Taking the New Antipsychotic Medications and Emerging from Severe, Lifelong, and Disabling Schizophrenia." This is more radical than it might seem. Since the mid-eighties, when it was shown that insight-oriented psychotherapy did schizophrenic patients more harm than good, psychotherapy, at least in public clinics, has rarely been offered them.

But the unanticipated effectiveness of Clozaril has led the Bridgeport authors to do some rethinking: some of those who had been grossly out of touch, often for decades, have come back to the land of the living, only to find themselves encountering unanticipated difficulties, different from, but not necessarily less troubling than, the illness itself. As Drs. Degen and Nasper observe, patients on Clozaril who "experienced the dramatic and unexpected alleviation of symptoms that expanded...their capacity for broader psychosocial independence...[often found it also] caused an upsurge of other [unexpected] symptoms...bewilderment, anxiety, depression, the release of traumatic childhood memories, social phobia, identity crisis..." As one such patient put it, "I don't know who I am"; another declared he hated sanity  because "now I have to figure out what I'm going to do with the rest of my life."  

In their 40s or 50s or 60s, after decades of psychiatric invalidism, many were, in their own words, "career mental patients"; they'd literally known no other life and in some sense have made peace with that fact. Having never had the chance to accomplish the psychic tasks of adolescence nor meet the usual milestones of adulthood, they nevertheless understand all too well what they've missed out on, seemingly irreparably. In fact, as Degen and Nasper relate in their book, not all who encounter these difficulties inevitably find awakening worth the price; as the man who hated sanity explained, I want to be crazy...That's the only life I've known... Awakening is not enough.

Degen and Nasper say. A new kind of supportive psychotherapy must be designed to meet these unforeseen needs and problems if "awakened" patients are not to give up but to adapt successfully to the massive change in their lives that they least of all could have expected.

*RETURN FROM MADNESS by Kathleen Degen and Ellen Nasper is published by Jason Aronson Inc. 1996. 



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