Many of those with long histories of severe mental illness have been "awakened" to increased functional levels by the new generation of atypical antipsychotic medications. What new programs and approaches are needed to respond to them, and has the mental health system met these challenges?
(Column: Ask the Doctor)
"The poor fellow was now completely confounded. He doubted his own identity, and whether he was himself or another man… 'God knows,' exclaimed he, at his wit's end; 'I'm not myself—I'm somebody else' that's me yonder… I was myself last night, but I fell asleep on the mountain,… and everything's changed, and I'm changed, and I can't tell what's my name, or who I am!'" - Rip Van Winkle by Washington Irving
The 1990's have ushered in an era of new, more effective pharmacological treatments for schizophrenia. These medications often have far fewer side effects than older drugs. More importantly, many who had not previously responded, or fully responded, to "traditional neuroleptics" are experiencing vastly enhanced improvement of their symptoms on these medications. Although such dramatic responses are not as common as we might wish, medications such as risperidone, olanzapine and clozapine have allowed many, many people with severe mental illness to "awaken", like Rip Van Winkle, from years or decades of crippling psychosis. Those who may have spent decades in lives of isolation, confusion, dependence and curtailed activities now may face a world where "everything's changed" from the period before their psychoses. They cannot help but struggle with who the real them is, and which is the real world.
In my clinical experience, such "awakenings" raise important functional, personal and existential concerns which have only been marginally addressed by the individuals and programs charged with the task of caring for those with severe mental illness. With the loss of disorganized thinking, delusions, or hallucinations, newly recovering individuals are free to reassess the status of their lives. The internal world that they have known has changed dramatically, and the external world has changed during the years they were dominated by psychotic thoughts or experiences. These changes leave many filled with both grief and hope as they reassess the world and their relationship to it. Thus, treating what the professional community would call "robust responders" to atypical antipsychotics requires more than fifteen minute bi-weekly medication checks. Being helpful means not only assuring the availability of medication, but addressing peoples' altered sense of self, of connectedness, and of purpose.(1)
"Ironically, at the same time my delusional voices stopped, new riveting real voices replaced them. In late 1994, these frightening angry selfish voices began to fill my consciousness. These were voices which wanted to abandon disadvantaged people, including the mentally ill -- including me …. They demanded to cut community mental health services, treatment, housing, and research." - Ken Steele (2)
In his column last year, Ken vividly captured one of the fundamental issues of the current climate of mental health care. Just at the time when biological interventions have become available which can offer new promise of recovery and rehabilitation for those with serious mental illnesses, the political climate finds us in an era of fiscal retrenchment, "managed" reimbursement, inadequate housing, limited social, rehabilitation and psychotherapy programs, and the disavowal—at virtually every level of government and citizenry—of the societally-shared responsibility for those in need.
Certainly, New York City offers a wide array of sensitive, caring, effective and appropriate services. However, such services and programs are insufficient in number, accessibility, or availability. Many lack the flexibility, vision, consumer-focused philosophy and rehabilitatively oriented programming to meet the needs of the "awakened" population.
One of the most difficult aspects of writing a column for city-wide publication is the recognition that, no matter what one says, one's readers will find that one's generalizations do not ring true to their experiences. Certainly, programs like the Times Square Hotel, the Awakenings Groups, the Mental Health Voter Empowerment Project, and NAMI groups throughout the city make it clear that all is not a wasteland. However, for many, finding a residential program that does not infantilize one, a psychiatrist who not only dispenses medication but actually talks to you or a vocational rehabilitation program that includes real work in real jobs for real wages can seem as challenging as facing psychotic relapse. It is, naturally, impossible to list all of the many positive examples of such programs that government and private agencies provide in the city. It is easier to recognize that we need more of them -more housing, more consumer-run day and evening activities, more employment programs and more opportunity to give those newly awakened a reason to "get out of bed." Certainly, the need for appropriate, focused individual and group psychotherapy to address the incredible losses of your past, your history, your relationships and your lives—that many of you faced before the era of new psychopharmacology—poses a challenge to our mental health system, to elected officials and to our society.
1. Duckworth K. Nair V. Patel J. Goldfinger SM. Lost time, found hope and sorrow, the search for self, connection and purpose during "awakenings" on the new antipsychotics. Harvard Review of Psychiatry, 5(4) 227-33, 1997
2. Ken Steele, Outside Schizophrenia. New York City Voices