BringChange2Mind

August 5, 2010

Why I am an Advocate, by Brandon Staglin

I have schizophrenia, and sometimes I think about whether I have let my illness define my life. I work for my family’s nonprofit, International Mental Health Research Organization (IMHRO), as a mental health advocate. If you asked me when I was a kid what work I would want to do, the last thing I would have said was to take on a family enterprise. I used to value my individuality above anything else, and dreaded being corrupted by conformity. Thanks in part to my illness, my values have shifted since then.

Brandon Staglin

I had a psychotic break in 1990, the summer after my freshman year at Dartmouth College. A friend managed to get me to a psychiatry ward. At first, I could not accept that I had a mental illness. I had a life plan, to be an astronautical engineer! I would not be cut down by a schizophrenia diagnosis.

Three nights into my first hospitalization I decided I would get out of the psych ward immediately. I was unable to sleep, furious, and refused to take meds. A nurse was on her way with an injection to make me sleep. I would not let her violate my consciousness! In fact, I would just knock the syringe from her hand and walk out of the unit before she could do anything. …Of course, when I tried that, several nurses wrestled me onto a bed, strapped me down and gave me the injection.

Now I understand their perspective, but at the time I felt mistreated. Still, when I woke up the next morning I realized I needed to get better somehow and get on with my life. Hard though it was, I agreed to a treatment program.

I was able to return to college, get my engineering degree, and secure a job designing communications satellites. I kept my illness under my hat.

When I had my second psychotic episode in 1996, it became clear to me that I could no longer work as an engineer. The job was too stressful for me, I admitted, with disappointment. But, my wonderful parents offered me a position in the winery they own and run, Staglin Family Vineyard.

A few years later, a film director was interviewing our family for a wine film he was making for international release. The time came when the director asked my parents what had inspired them to start their annual fundraiser for mental health research, the Music Festival for Mental Health. I made a split-second decision. I did not want to hide my illness, such a large part of my life, any more.

“I can tell you about that.” I told him my story.

The director, a little hesitant, asked, “Do you want me to keep this out of the film?”

I blinked, and said, “No, by all means put it in!”

Although my disclosure (and our mental health advocacy) ended up on the cutting-room floor, a change had taken place in me. I volunteered to help produce the Music Festival in its next year.

I began to talk more openly about my disorder. People were interested! When asked why I was so gung ho about helping to raise awareness, I explained that mentally ill people could be misunderstood by the public. Often, even caregivers found it hard to understand their patients’ suffering. I realized as I spoke that I wanted people with mental illness to be understood, to retain their sense of self-worth. I thought then, “This is something I can help with.” When asked, I began giving interviews for local radio and TV.

The next Fall a Music Festival patron, Liz Browning, sent me a link to a Seattle Post-Intelligencer article about her son’s experience with schizophrenia. The health care system had failed to treat Marc adequately, the article reported, and after years of progress of his disease, he may have been beyond therapy. I was heartbroken for her and for Marc. This issue was much, much bigger than what I had experienced.

Since then I have met many people whose experiences with their own illnesses have inspired me. In September 2009 I appeared in the BringChange2Mind PSA. Talking with the Closes, the other principals and the people who helped to produce it showed me how much passion there is behind this cause. The momentum of that day caught me up and has never let me go.

Today, my job as communications director and blog-writer at IMHRO enables me to pursue my own passion for the cause. Has my condition defined my life? Yes, to some degree–and I like it. It has given me a new direction which I hope makes people’s lives better. And, it has led me to compassion and patience. I love my life and would live it the same way again, illness and all.

To learn more about the Staglin family and the International Mental Health Research Organization (IMHRO) please visit their homepage: http://www.imhro.org/

To watch a video clip of Brandon and his mom, Shari, sharing their story with BringChange2Mind, please visit this link: http://www.youtube.com/watch?v=Pa3CddPGD8A

May 8, 2010

2010 Fountain House Luncheon

Photo courtesy of Leslie Barbaro

Glenn Close, Nancy Evans, Karen Pratt, Linea Johnson

I was diagnosed with bipolar disorder at the age of nineteen. At that point in my life a diagnosis was like being given a life sentence. I felt terrified, ashamed, and most of all, utterly alone. I felt that suddenly everything was wrong with me and that I was the only one going through this. Though I had wonderfully supportive family and friends, I thought that the only person I would be able to discuss this with was myself. Just me, scared and alone, in my own head.

Since then life has changed drastically. Five years later, having been stable for the last three, I was invited to attend the Fountain House Symposium and Luncheon: Visions and Voices, Understanding and Treating Psychosis; New Research, New Hope at New York City’s Pierre Hotel. On Monday May 3rd, almost four years to the day of my first hospitalization, I was sitting with the Close family (Glenn and Jessie Close and Calen Pick), Nancy Evans, Executive Director of BringChange2Mind, Rosalynn Carter, author, activist, and former first lady, and Kenneth Dudek, President of Fountain House. Having spent many years hiding my illness I was suddenly at a table full of friends and people who “get me”, who “get it”. I was sitting at a table full of people with much larger resumes, bigger titles, and more impressive histories, and yet because of our shared understanding of mental illness we were all equal. We all understood one another. These are people who understand what it means to be psychotic, depressed, bipolar, etc. without even asking.

The event addressed never-ending hope through education, research, and personal stories. It provided infinite hope through community, courage, and love. The event began with the Symposium in which a panel of psychiatrists discussed psychosis. On the panel were Beth Baxter, MD, Donald C. Goff, MD and Jeffrey A. Lieberman, MD. Each panelist shared their own thoughts on psychosis before the Master of Ceremonies, Consuelo Mack, asked more individualized questions. We heard about the newest discoveries in research and the importance of early diagnosis and intervention. We heard Dr. Baxter’s personal story as a psychiatrist who also has schizo-affective disorder. And we heard the importance of sharing stories and the importance of research in the battle against stigma and discrimination.

After the panel the BringChange2Mind PSA and accompanying videos were played and Glenn Close was given the 2010 Humanitarian Award. Glenn’s speech was extremely powerful as she reminded us of the importance of saying the stigmatized words in order to take away their power. For example, it is important for me to say, “I have bipolar disorder” not simply “I have a mental illness”. After a short speech Glenn asked Jessie and Calen to come to the stage to share the award. Their speeches were moving and powerful and once again reminded me that I am not alone. They reminded me that 1 in 6 people have a mental illness, yet few are willing to talk about it.

Attending the Fountain House Luncheon renewed my drive and once again inspired me to share hope for all those afraid to share their own stories. I never want another person to go through the pain of feeling alone in their illness. Things are changing and I am so lucky to have been able to see it first hand at this wonderful event. We are going to change the world.

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