An electronic newsletter of the Coalition's Center for Rehabilitation and Recovery
Elizabeth Saenger, PhD, Editor
The Center for Rehabilitation and Recovery provides assistance to the New York City mental health provider community through expert trainings, focused technical assistance, evaluation, information dissemination and special projects.
At the annual American Psychiatric Association (APA) Convention in May, a profusion of presenters and exhibits vie for your attention. Posters about the latest research, and professionals with whom to mingle, abound. Here we will focus on one presenter, and her amazing story of recovery. A few brief observations from other participants follow.
Lisa J. Halpern, MPP, Director of Services at the non-profit service provider Vinfen, presented, “What Does Recovery Mean to People With Schizophrenia?” She reviewed models and definitions of recovery familiar to many of us, but enriched her talk with examples of her own experiences in recovery, inspiring me to interview her.
What was your first episode of schizophrenia like, and how did you move beyond it? What factors may have contributed to your extraordinary resilience?
My first episode of schizophrenia occurred when I began graduate school at Harvard. I started getting lost on the three block walk to school and then in subway stations. One day I was in a subway station, and I thought that the antiquated Red Line trains were going to concentration camps and the green line trains were not. I would not get on a Red Line train. I was terrified and thought if I got on the wrong train, I would be killed. I was overwhelmed by the screeching noises of the trains, and the bright colors of the signs in the stations. At the time, I was on a date, and the guy I was with kindly offered to get me home by taxi.
It was not long thereafter that I lost the ability to read and write, and took a one-year medical leave from graduate school. I nursed my brain back to health with “brain training”; starting with preschool books being read to me, coloring in coloring books, playing with Play Doh; working my way up to word puzzles, card games, and juvenile books; and finally memorizing passages from Shakespeare.
My resilience comes from a “survivor” background: I am the granddaughter of Holocaust survivors, and my grandfather impressed upon me the importance of never giving up. Second, in seventh grade I was part of a class based on a “no guts, no glory” athletic challenges mantra–we walked 55 miles, ran 29 miles, and spent the night in waist-deep snow with only a coffee can full of supplies. The class taught me that you can do almost anything if you set your mind to it. When I got sick with schizophrenia, I would return to these lessons of survival.
You mentioned strategies that help you cope effectively with schizophrenia. Can you tell us about them?
I have six helpful hints I developed for myself, and for working with people with psychosis: see schizophrenia as a communication disorder (not a thought disorder) and simplify communication (concrete, clear, and concise). The other four are: interdependency–utilize other people to bring back data points to your doctor; hope–see sick people getting better; high expectations; and build the alliance on something other than medication.
I came up with these six points as a result of talking with families and people with schizophrenia, and listening to them. I am also a careful observer of the process–I watch my own behavior as if in a laboratory trying to learn from what is going on. I pay attention. The most important thing a provider can do to help people come up with strategies of their own is to listen. Individuals have the wealth of knowledge on their own; they know what works for them–they are the expert on themselves.
What ideas have you found most helpful in your own recovery? In your development as a professional in recovery services?
In my own recovery, I have found brain training–the idea that the brain with schizophrenia needs to be worked with like a broken body after a car accident–very useful. I have also gotten a lot of leverage from high expectations: my doctor believed I was going back to Harvard when I couldn’t read or write, and that made all the difference for me. When I couldn’t yet hold the hope for myself, other people held the hope for me. The importance of family and friends in recovery cannot be overstated. My family has been integral to my recovery.
In my development as a professional in recovery services, I think advocacy–finding my voice as an advocate—has been paramount.
What does recovery mean to you professionally and personally?
Recovery is about hope and empowerment–the belief that things will get better, and working to achieve that. It is about finding an inner strength to co-exist with the illness, and reach one’s full potential. Recovery is highly individual and variable in scope. It is an ongoing, fluid process through which one becomes able to mitigate effects of symptoms. It is hard work that requires accepting steps back while moving toward the desired goals that might include abstract concepts, like achieving happiness, or concrete ones, like staying out of the hospital.
Recovery means regaining things that were lost: cognitive skills, personality, friendships, schooling, a job, self-sufficiency and a renewed zest for life. A person may develop new purpose as he or she grows beyond the impact of the psychiatric diagnosis. People are ‘in recovery’ when they have recognized that, along with help from professionals, there are many things they can do to speed the return to a better quality of life.
How does your experience as a professional in recovery services inform, and affect, your own recovery?
Being in the field, I have had the opportunity to be trained in many modalities, and with each of these I take certain pieces from them and apply them to my recovery. Also, in addition to my job at Vinfen, I mentor individuals with psychiatric conditions. One young woman I work with who has psychosis pushes me to come up with strategies for her that will mitigate her voices and, as I do this, I help my own recovery because I am reminding myself of strategies I can use when my symptoms crop up.
How does your experience as a person with lived experience affect the way you think, and the choices you make, as a mental health professional?
I think–and I hope–I am more empathetic and comprehensive in my outlook as a mental health professional because I have lived experience. I see the whole picture and view each situation as “what would I want to happen here if this were me?” Because I have been hospitalized, had to leave school, and ultimately returned, I think I am more sensitive to the perspective of where a person is coming from.
As a mental health professional, I don’t give up hope for people, and I have very high expectations for them. I believe recovery is possible for everyone and that high expectations are needed and then–we must work with people to help them achieve their goals.
The number one complaint of people with a mental illness is that they are discriminated against in health and social services—and if they have two comorbid disorders, their treatment for the physical illness will actually be worse than that of people with the same physical illness, but no mental illness.
--Norman Sartorius, MD
Clinicians in emergency rooms often do not have the time to include a lengthy scale in their assessments of suicidality. We pruned a tool to focus on the most predictive factors. Suicide assessments are a prerequisite for recovery because more than 90 percent of people who commit suicide have a diagnosable mental disorder.
--Miky Kaushal, MD
I know that we are poised to create the tools to find new ways to treat, cure, and even prevent conditions affecting the brain. And we are on the cusp of identifying the biomarkers for mental illness, designing early prevention treatments for psychosis and revolutionizing the understanding of the brain circuitry and function.
--United States Vice President Joseph Biden
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