by Deborah Parker Wong
Brandon Staglin, recipient of the Mental Health Association’s 2017 Clifford W. Beers Award, has been recognized as the nation’s leading consumer advocate for improving treatment and attitudes toward people who live with mental health conditions.
Having recovered from schizophrenia, an illness that affects two million people living in the United States, Staglin is both a role model and an inspiration. He is the Board Director for the One Mind Institute, a non-profit dedicated to funding brain health research founded by Shari and Garen Staglin in 1995, and Director of Marketing and Communications for the Staglin Family Vineyard. Proceeds raised from the Staglin Family’s Annual Music Festival for Brain Health, this year’s event takes place on September 16th, have has surpassed $256 million dollars since 1995.
In the below interview he talks candidly about his work and life experiences.
What would you say to someone who has a family or community member who has been diagnosed with schizophrenia to help them understand that it’s possible to manage and overcome the disorder?
Managing schizophrenia can be a challenge, but one that I have been able to meet and succeed at. One of the most helpful things I’ve done toward returning to wellness has been to consciously accept that I have a brain health condition that will stay with me for the foreseeable future. When I was able to accept this, I stopped fighting that idea and began to allocate more energy to pursuing meaningful parts of life, like relationships, career, hobbies, and advocacy. Now, managing my condition has become routine and consumes much less attention and concern. And these meaningful life pursuits have strongly developed my resilience and stability.
Other super-helpful factors in my recovery have been early and consistent access to quality psychiatric care, including medication; the loving support of my family, and my participation in a 1998 clinical trial for an experimental form of treatment called cognitive training.
Today, I work at a job that I care about, own a home, and am happily married for over eight years to my wife, Nancy. She and I take care of our dog, Cooper. Nancy and Cooper have taught me so much about unconditional love, which has been my life’s greatest reward.
I define recovery as the ability to transcend the confines (some physical, some conceptual) of patient life and to pursue the things that matter to you. It may or may not entail being symptom-free or treatment-free. I consider myself recovered although I still take medication and see my psychiatrist regularly. And I would not want to have never developed schizophrenia, because dealing with it for myself and as an advocate has taught me valuable lessons in wellness, responsibility, and compassion.
In addition to the medical, social, and motivational factors I describe above, I also make it a point to exercise every day, to eat mindfully, to meditate regularly, and to get a sensible amount of sleep each night. All these help to keep me steady and strong.
You haven’t let this disorder define who you are but how important is it for family members and caregivers to separate the person from the illness?
There were a couple of months shortly after my initial episode in 1990 when my recovery was not progressing well, and I experienced deep depression and suicidal ideation. The most impactful thing my Dad has ever said to me was during that time: “There’s a lot of love coming from here, Brandon.” Although I was too sick at the time to feel or return that love, his words reached me, and inspired me to want to get well, to share in the love of my family again. It was a major boost toward recovery. It worked because, deep within, I was still the person I had been, and my capacity to love was intact; it was just obscured temporarily.
I also retained the capacity to dream. At one moment when I was seriously considering suicide, what brought me back was the memory of the chimpanzee behavior research I had been assisting at the Oakland Zoo, once a week, and the lifelong fascination I felt for the type of scientific learning that entailed. Because I wanted to continue to learn, I decided then to keep on keeping on. I am very glad to still be here, in part because I have since learned a great deal more about the science of behavior!
I believe it is important for families and clinicians to help patients reconnect with their loves and their dreams, for these can motivate patients to work toward recovery.
Can you tell us what the One Mind Institute is doing in terms of research towards finding a cure?
One Mind operates several programs to find better treatments, preventions and cures for schizophrenia and other brain disorders. Focusing on schizophrenia, our most important work has been in the realm of early detection and intervention. As with any other disease, evidence indicates that the earlier someone at risk for (or newly experiencing) psychosis can access treatment, the better their potential for recovery. Since the early 2000s, One Mind Institute has seed-funded and supported the research of the North American Prodrome Longitudinal Study (NAPLS), a nine-university consortium investigating the means to detect and treat psychosis even before a first episode occurs.
Today, I am co-leading a program of One Mind to form a learning healthcare network among community early psychosis treatment centers throughout California, with the intent to enable this network to participate in similar collaborative research. It is my hope that we can develop a way for this network to pool their data with that of the NAPLS to make statistically significant breakthroughs faster, for validate ways to prevent schizophrenia and other serious mental illnesses on a societal scale.
You’ve written about the NIMH’s RAISE project. Have you benefited from this type of early intervention and holistic treatment?
The RAISE study’s discoveries have formed the foundation for federal funding that has enabled over 100 more early psychosis clinics to open nationwide, which is awesome for public health.
During my first episode in 1990, RAISE-model treatment (called Coordinated Specialty Care, or CSC) was not generally used for schizophrenia. However, with the help of my family, I engaged in a comprehensive care “program” of our own invention which combined medical treatment, volunteering (at the Oakland Zoo and the Marine Mammal Center in Sausalito) and continuing education (auditing classes at UC Berkeley). This combination of traditional treatment with community involvement and responsibility provided me with weekly structure, and kept me learning and growing as I stabilized. In many respects, this combination was similar to RAISE treatment.
About two million people in the U.S. are diagnosed as schizophrenic while an estimated 5.5 million Americans of all ages have Alzheimer’s disease. Alzheimer’s seems to get the lion’s share of media attention and research dollars. What is One Mind doing to raise awareness and dispel stigma around schizophrenia?
One of our programs, Care Connect, operates a campaign called Strong365 (http://strong365.org) that educates youth about what psychosis is, about the availability of early care, and about the fact that seeking help is a sign of strength. This campaign provides digital ads to youth who search on the web for terms related to psychosis, which send them to the Strong365 website to learn more and to connect with peer chat or with a treatment center if desired.
In 2009, One Mind Institute co-founded Bring Change to Mind, a leading national organization raising awareness and fighting stigma around mental health conditions. I continue to speak, blog, and participate in interviews about my experience, which I hope educates many.
In a recent study of genetic factors that put people at risk of developing mental illnesses, scientists have found a new gene linked to psychosis. You’ve described this as “following the pathways” research. Can you tell us more?
Studies like this one are important in that they can provide clues to the biological processes that can lead to schizophrenia. Once scientists know of a gene or network of genes that contributes robustly to risk for the disease, as in this family, they can investigate the biological pathways that develop from the activity of these genes and that can bring on the symptoms, and from this knowledge, find biological targets for the development of more focused treatments.
This “following the pathways” type of research has recently started to succeed. Steven McCarroll, of the Broad Institute at Harvard and MIT, spoke at our 2016 Music Festival about how his lab elucidated the biological mechanism behind how a specific mutation in the C4 gene can strongly increase risk for schizophrenia. This was tremendously exciting news.
In a very personal expression of hope and inspiration, Brandon Staglin has written and publicly performed an original song titled “Horizons Left to Chase” that explores the possibilities that exist despite having a schizophrenia diagnosis.