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A Brave National Spokeswoman: An Interview with Glenn Close

December 10th, 2009 by Brandon Staglin
Glenn Close with sister Jessie

Glenn Close with sister Jessie

Glenn Close is America’s most visible advocate against stigma involved in mental illness. On October 21, she and a team of like-minded people from the Child and Adolescent Bipolar Foundation, Fountain House, and IMHRO launched a public service announcement in which she appeared with her courageous sister Jessie and nephew Calen, both of whom live with mental illness. The informative stigma-busting website advertised by the PSA, BringChange2Mind.org, received 2.75 million hits on its first day and is now overflowing with stories submitted by people at large who live with their own conditions. Having been involved with the PSA, I’ve had the privilege to meet Glenn and her family. Words can’t express how much I admire them. Join me now for an interview with this wonderful lady.

BKS: Glenn, I remember the evening before the PSA shoot you told me you were a little nervous. Even though I could tell that Jessie and Calen were fully ready to do it, I can imagine that exposing your family’s personal information for the good of people everywhere must have been a bit of a scary prospect. What was going through your mind the evening before the shoot?

GC: I was grateful that both the Staglin and the Close families could get together the evening before we all were due to show up at Grand Central Station to shoot our PSA. I was nervous on several levels: Having been in the movie business for over twenty-five years, I knew that shooting something in a vast and public venue like Grand Central was not an easy task. Although we had wonderful support from the Port Authority, we were under a strict time constraint and had a lot to accomplish in twelve hours. We not only had to shoot the PSA, using over 100 volunteer extras, but we had to also shoot individual interviews and a “Making Of” piece as well—and feed and accommodate our cast and crew in a highly public place.

I was also nervous because I was aware of what we were asking of those loved ones, living with mental illnesses, who had had the courage to show up and out themselves on what was going to be a national spot. My sister, Jessie, and her son, Calen, had flown all the way from Bozeman, Montana. They do not travel very often and lead quiet lives, so I did not take their willingness to subject themselves to the inevitable stress that travel entails these days for granted. Jess was able to bring her little service dog, Snits, with her so that helped a lot, but it was a daunting proposition for both of them.

My nervousness was tempered by my sense of wonder and excitement due to the fact that we had actually pulled it off—we were actually going to make the PSA, directed by one of the best directors in the world—Ron Howard.

BKS: Now, the public’s response to the PSA has been overwhelmingly supportive, and millions of people have been touched by your and your family’s message. How does that make you feel?

GC: The fact that so many people have responded to the BringChange2Mind campaign is deeply gratifying to me. It’s just the beginning, but our goal is to erase the fear and shame around mental illness so that it is something we can talk about openly and embrace as just another aspect of the human condition. I feel joyous about it. It feels so right. As an actress, I have always felt that my craft should only connect me, more and more deeply, to my fellow human beings. I’ve always felt that if I’m feeling something, there are thousands, if not millions of people, who must be feeling the same thing. So I’m not surprised that our campaign has gotten such immediate and passionate response, because mental illness affects most of us and it is a great relief to us all to be able to fling the doors of silence open and talk about it.

BKS: I can tell you really love and admire your sister and nephew. You said on one TV interview that Jessie was your hero. Do you feel that the experiences you’ve shared with them in the PSA shoot and afterward have brought you closer together?

GC: Calen and Jessie are my heroes because they have faced their illnesses with great courage and fortitude. They live with huge challenges—day in and day out—and they are managing the delicate balance of meds and lifestyle that enables them to be highly productive, creative individuals. Jessie is a writer who is near to completing a book and Calen just had a highly successful exhibit of his paintings. The whole BringChange2Mind campaign would never have happened if it weren’t for them because they inspired me to actually try to do something for them and all those living with mental illness, which for me translated into helping to tackle stigma.  That desire led me to Fountain House, to the incredible advertising team, “its the Watsons”, to the Staglins and to the formation of the amazing core team that created the BringChange2Mind campaign. This whole journey has brought Jessie and me closer. It has given us a united voice and is bringing us a sense of great relief and happiness.

BKS: Now, the BringChange2Mind.org website offers visitors the opportunity to upload their stories about their own experiences with mental illness for the world to share. What would you say to people who might want to come forth, but are, as you said you were, a little nervous about it?

GC: Already many people have shared their stories with us—not only on the BringChange2Mind.org site, but also on our Facebook page. I hope that those who have been afraid to acknowledge their illness and talk about it will take heart after reading the wonderful outpourings of so many people and know that they are not alone, that there are thousands of people who understand and support them, that we are all connected.

BKS: Glenn, thank you so much. Please say Hi to Jessie and Calen.

An Interview with Shari Staglin, my Mom and President of IMHRO’s Board

December 3rd, 2009 by Brandon Staglin
Shari and Garen Staglin listen at Music Festival 2009 Symposium

Garen and Shari Staglin listen at Music Festival 2009 Symposium

Shari and Garen Staglin are heroes, especially to me. They care passionately about helping people with mental illness—it takes up much of their current life. Being able to burn the candle at both ends for ongoing weeks, months and years, and having met so many like-minded people in the world of mental health advocacy and research, they have been able to accomplish a lot. Their Music Festival for Mental Health is the largest mental health charity event in the world, in terms of funds raised (almost $95 million) over 15 years. IMHRO, the international nonprofit that the Music Festival has become, is continuing to grow fast, thanks in large part to their work. And, I, their son, especially admire them not just because they are my parents but because they devoted so much time and energy to care for me when I was sick with schizophrenia. Their unconditional love has made all the difference for me. Please join me now in an interview with my Mom.

BKS: For a long time, I was very sick and you gave it your all to help me cope and get better. Then, the idea came to you to launch the Music Festival. When did the turning point come for you when it was not just about me but about helping people with mental illness everywhere?

SKS: The turning point came when a few years after your psychotic break in the early 90s. We had met Richard Williams our friend, Carol Batten’s boyfriend (now her husband) and a travelling conductor, who was so impressed with the beauty of our vineyard and Napa valley (he was from NY) that he offered to help us produce a Music Festival there. Around the same time, maybe 1993, we met Charlie Trotter at a Birmingham Magic moments charity wine auction and asked him to come to our vineyard sometime to do a dinner for us. He said he would and he’d do it for free if we made it a charity event. Later one morning as dad and I were running around the vineyard, it came to us that we could put the two offers together and do something for mental health research. We had been looking for a way to donate to mental health research to find out the causes and the cures for mental illness, because we didn’t understand why you got sick and we wanted to know why so we could find out the right treatments. We also had learned along the way that mental illness was much more widespread than we had realized and so there would be many more people who would support a benefit along these lines. Hence the 1st Music festival for Mental Health was born.

BKS: You’ve grown a lot over the years I’ve known you. I’d bet that part of that has come from making sacrifices to take care of me when I needed it, and part from spreading your wings with IMHRO. How would you say that these experiences have changed you?

SKS: I was changed because I learned there are some things you just can’t manage or control—as we watched you get sick and as we saw your personal struggles to get better while still moving forward with your life. I wished I could take on your illness myself. I also learned that you and we were vulnerable to misfortune, through no fault of our own and we needed to learn a new approach to just deal with it and do our best to make it better and never give up, no matter how slowly things went (this was hard for me who has no patience). Dad was instrumental in convincing all of us that you would get better. The hope he saw and transferred to us, made a huge difference in my ability to cope and relate to you on a positive basis (so important to your progress).

BKS: I know how much you love putting on the Music Festival. What do you like most about your experiences with the event?

SKS: These experiences have made my life much more exciting, fulfilling and fun. We’ve learned how we could take one passion, wine, and attach it to another passion, mental health research (essentially finding ways to give people back their lives or preventing them from ever having part of it being taken from them) to come up with a successful fundraising effort that is fun and hopeful. It has given us a way to meet likeminded people who also want the same thing and to contribute to it.

BKS: You have immense faith that cures for mental illnesses will come soon, within a generation. What do you base that on?

SKS: The identification of the human genome is the single most impt thing in the last 10 years that has made it possible to identify some of the building blocks of brain disorders. The defective genes being found are a path to finding the right treatments. There will be other paths too. But through this methodology a treatment to repair the Downs Syndrome defective gene, Fragile-X, has succeeded in giving back normally functioning cognitive abilities to adults with this syndrome. This means that gene repair for other defects is also possible and that research will find the answers.

BKS: What’s next for IMHRO?

SKS: We’re starting more international participation through new governing board and SAB members, which is already happening. Also, we’re adding a new focus for our mission: public awareness, hence our involvement in the BringChange2Mind PSA. Making the public more aware of what people with mental illness experience is not just an end in itself, it can reduce stigma, and can help raise funds for research. Also, we’re involved in additional fundraisers around country, such as the Sunshine from Darkness gala in Sarasota, Florida, and smaller dinners throughout the U.S.

BKS: Thanks Mom! :) Readers, if you’d like to learn more about some fun upcoming IMHRO fundraisers you can attend, please visit our events listing.

I Have Seen Angels

November 24th, 2009 by Brandon Staglin

I believe that angels are real, and walk among us. Taking into account that I’ve had schizophrenia for nineteen years, you may wonder what I mean.

Even before I had a psychotic break at age eighteen, I felt I had a special relationship with God. I felt that the academic ability God had given me entailed a responsibility to accomplish significant things for humanity. Literally, I wanted to reach for the stars: my life’s dream was to build an engine that could carry humankind to other solar systems, as a step in the quest to someday understand the nature of God. In some ways, I feel I was off base then, now preferring to leave spiritual mysteries to unravel themselves as they will. But, one such mystery continues to unfold in my life.

Ron Howard directs me for my scene in the BringChange2Mind PSA

Ron Howard gives direction for my scene in the BringChange2Mind PSA

When I was eighteen, during my first summer off from college, worst came to worst, and I had a psychotic break. That was when I started hearing the voices. I got out of the hospital after a few days, and resumed searching for summer employment. I realized that I was at a bit of a disadvantage then, but still felt frustrated and disappointed when I hadn’t found a job three weeks later. The comment “stupid kid” kept echoing in my head, along with “Baby Brandon.” I would cringe each time, because I just knew the voices must be right on a deep level. I got accustomed to listening to them to learn more about myself.

So, soon, my sense of self was spinning like a demagnetized compass. I felt that I had let not only myself but God down, now that I was so sick. I began to suspect that God and His angels were very disappointed in me. I constantly checked my soul’s status by listening within myself to how angels and demons judged my conduct, moment-to-moment. If I felt the angels approved of what I had just done, I could relax. But if a devil was jumping for joy, boy, I’d better watch out!

During that dark, desolate time, there was a beautiful influence in my life. Even though I was too sick to fully appreciate them then, my family loved me, regardless of what I thought of myself. They were there to listen and talk, even at two AM, there to be sure I took the meds I hated, there to help me find ways to engage with the world. My Mom and Dad are the best, most caring parents a guy with schizophrenia could wish for, and they helped me to pull through.

When I first chose to speak publicly about my condition, they supported my decision.

Flash forward to this August.

Now, the nonprofit my parents started to speed the search for a cure for schizophrenia and other major mental illnesses is almost fifteen years old. Our group, called International Mental Health Research Organization (IMHRO) is one among many. Mental health advocacy groups are popping up on my radar left and right.

One such organization is brand-new. Bring Change 2 Mind, and its campaign to fight the stigma involved in mental illness, are spearheaded by actress Glenn Close with startup fundraising support from IMHRO and several like-minded advocacy groups. Bring Change 2 Mind launched its campaign with a daring televised public service announcement in October. I am thrilled to have been involved in the filming. What an exhilarating, soul-nurturing day.

About a dozen brave people with major mental illness were there on the set at Grand Central Station, along with their families. Each of us wore a white T-shirt identifying our condition, or relationship to someone with a condition. Ed Leardo wore “post-traumatic stress disorder.”  A quiet, bright-eyed Marine, he came back from war with the condition and now counsels other afflicted Marines. His T-shirted “battle buddy,” Laurie Sutton, is a strong, kind psychiatrist and Brigadier General. The two walked together on camera. Artists Anthony Holbrooke (”bipolar disorder”) and Agathe Snow (”depression”) also walked together, each wearing a shirt that also told that each was the other’s “better half.” Seeing them, arms around each other, always close, warmed my heart. Karen Callaghan (”Mom” on the front, “depression” on the back) and Tricia Martino (”depression” on front, “daughter” on back) were neverending wellsprings of quiet joy that day. Glenn Close and her sister Jessie (”bipolar disorder”), nephew Calen (”schizophrenia”), daughter Annie and niece Mattie all appeared courageously on camera, Jessie and Glenn speaking the climactic lines. I am so, so proud of them. I’m proud of my Mom and Dad, too, for appearing, with me, on camera. And, I admit, I feel proud to have been there with them.

Many of us were publicizing our conditions for the first time. We did it to let people see who we really were, and maybe inspire others to follow suit.

And, the production team also put a lot on the line, many of them working pro bono. Ron Howard donated his time to direct, and as the guiding authority on the shoot, fulfilled his role with calming (and funny) expertise. (”I should have a T-shirt that says “director,” because everyone knows I have serious mental issues!”) Chris, the incredibly compassionate young man who interviewed the principals, also donated his time. Laura, a directing assistant, summed up the team’s feelings when she said “It’s so wonderful to work on something like this, a good cause.”

The next day, my family and I flew home. As I gazed out the window I reminisced about all the wonderful people I had met and their amazing mental health campaigns, and realized something very cool… I still believe in angels. I had actually shared the weekend with many of them.

Angels are just people like you and me, people who are agents of good in the world. Anyone you pass is probably an angel in some way.

Please, watch the PSA, then visit http://www.bringchange2mind.org.

Science with Passion: An Interview with Dr. Ty Cannon

November 20th, 2009 by Brandon Staglin
Dr. Tyrone Cannon

Dr. Tyrone Cannon

I am proud to have known and worked with Dr. Ty Cannon over the years IMHRO has funded his research. His investigations are so creative, solid, and useful, and his low-key way with people so appealing, it is no wonder that he has led amazing discoveries as head of two facilities at UCLA: The Staglin Music Festival Center for the Assessment and Prevention of Prodromal States (CAPPS) and the Center for Cognitive Neuroscience. And, he is lead scientist of an 8-facility consortium called NAPLS, or North American Prodrome Longitudinal Study, which studies how to predict whether people at risk for developing psychosis (people in the prodrome) actually are headed for a psychotic break, so that they can be treated before it happens and bypass years of disability. In 2008 the National Institute for Mental Health awarded NAPLS a $23 million grant to conduct its five-year study, which aims to not only hone doctors’ accuracy in predicting a psychotic break to 80% or greater, but to develop safe, effective therapies for people in the prodrome. Clearly, Dr. Cannon has not just a razor-sharp mind, but also a big heart.

BKS: Ty, you got your PhD in Psychology, specifically Clinical Neuroscience and Biobehavioral Genetics, in 1990. You’ve been doing mental health research for at least 20 years. What interested you to get involved in this field in the first place? Do you have any words for young people who would like to work in the field?

TC: From my earliest childhood memories I was always fascinated by the question of why people think and act in the ways they do and especially by the question of why different people think and act differently from each other.  So maybe I am just “hard-wired” to be interested in human psychology.  Then I had some experiences with people suffering from psychiatric disorders – initially in my family and then among my friends in high school and college.  As I learned about genetics and the brain in my formal education, I realized that there are very powerful methods and approaches we can take to find out the causes and to develop treatments for these conditions.  We don’t just have to wonder about and develop theories of such things, we can actually conduct studies and test out our ideas to see if they are true.  I found the process of scientific discovery to be exhilarating, and I was hooked!  As I began graduate school working with my mentor Sarnoff Mednick on the causes of schizophrenia, I felt I had found a life mission that would keep me full of passion and energy – a prediction that continues to be a borne out for me today.  To the young people considering a career in research on mental disorders, I would say, by all means, jump in!  This is a very exciting time of discovery in this field and you can make a huge difference in people’s lives through your work.  I would encourage you to approach these issues from multiple perspectives, including molecular biology, genomics, systems neuroscience, and psychology.  These days one needs background in all of these fields to tackle problems as complex and intricate as the causes of schizophrenia and other psychiatric disorders.

BKS: You received your first grant from IMHRO, then called the Staglin Music Festival for Mental Health, in 1999. Since then you’ve started to make exciting discoveries in using neuroimaging to find potential biomarkers to predict psychosis onset. In fact, in 2008 you found a potential “near perfect predictor of psychosis onset” in a small MRI scan study involving clients at CAPPS. What inspired you to pursue neuroimaging as a technique for this goal, and how confident were you that it would lead you this far?

TC: I think about it this way.  How does the ‘brain’ support the ‘mind’?  By ‘mind’ I don’t mean ‘spirit’ – I think we should keep such religious/cosmological questions separate from the scientific study of what I like to call the ‘mind-brain continuum.’  Humans have evolved such a fascinating armamentarium of mental phenomena, including such things as language, imagery, a sense of self, and the ability to willfully guide our own behavior.  Brain imaging is one of the key methods that helps us study the junction of the mind and brain – it lets us examine the physical systems that are required for our experience of such a rich psychological repertoire.  And it has become a key method in describing how brain systems become dysfunctional in people with or at risk for mental disorders.  I believe brain imaging carries a lot of promise in helping us to figure out how brain systems may go awry and how to correct or compensate for these changes – but only in combination with other critical approaches including genomics and animal models.  This is because each approach has its strengths and weaknesses as a window into the causes of mental disorders.  We’ll only make substantial progress if we can successfully integrate all of these approaches.

BKS: Now, building on the success you and NAPLS have had so far, your goal for both predictive power and sensitivity is 80%. That could be a breathtaking achievement that would change the way mental health care is conducted. How does it feel to be involved in such a potentially game-changing enterprise?

TC: I wake up every day with a full head of steam, eager to get to the place where our scientific work leads to a sea-change in health services and a major improvement in quality of life for millions of people.  My colleagues and I in the NAPLS project are doing something on a scale that has never before been attempted – developing a prediction algorithm for psychosis that could be applied to detect people who will later go on to develop serious mental illness using objective biological and psychological tests, including imaging, genomics, and cognitive testing.  If we can detect such people early, before the underlying biological processes have ‘taken root,’ we will have a much better chance of preventing the onset of full disorders and the compromises in functioning – at work, school, and socially – that often accompany these disorders.

BKS: Meanwhile, what new means to actually treat prodromal psychosis are you and the NAPLS team looking into?

TC: It is important to identify what we do understand and what we don’t.  What we think we can do now is prevent some of the functional disability associated with psychotic disorders like schizophrenia through early intervention using psychological therapies.  We are testing a family-based psychological treatment approach with this goal in mind, supported in part by funds from the Obama stimulus package for NIH and in part by funds raised by IMHRO for the UCLA Center for Cognitive Neuroscience.  I don’t think we know yet how to prevent psychosis per se, but we have some interesting leads, based on the idea that there is a problem in the plasticity of brain cells in people who develop schizophrenia.  We are many years away from clinical trials testing interventions that improve plasticity in the prevention of these disorders, but there are some exciting animal models where proof of principle findings are beginning to emerge.

BKS: If you could say one thing to spread hope for young people who are at risk for developing psychosis, what would it be?

TC: I think the main message is this:  While life may be more challenging for you than for others you know, this does not mean it can’t be as enjoyable and fulfilling for you in the long run.  I really admire those who refuse to be a victim and who turn their own adversity into a positive (people like you, Brandon!).  My advice is based on that principle.  Understand that your vulnerability makes you more reactive to stress and try to limit your exposure to things that really push you over the edge, but at the same time, stay engaged in life – keep your connections with friends and family, stay interested in your hobbies, stay committed to completing your education.  Understand your strengths and weaknesses and continue to develop and refine goals for your life based on this.  These are the activities that help to create and maintain a sense of meaning and purpose and they are always available to you.

BKS: Ty, thank you very much! :)

Trust in Medicine

November 16th, 2009 by Brandon Staglin

To readers who live with a severe mental illness: you may know what it’s like to accidentally take the wrong medication dose.

Last night I did something that’s left me pretty tired and spacey today: I accidentally took the aripiprazole that I had in my case for the next morning. This drug is an antipsychotic that works well for me, and has the nice effect of jumpstarting my motivation in the morning.

When I open my eyes at 6 AM, I customarily take that dose and SHAZAM!—my mind floods with all the things I want to take care of that day. It really gets me going.

So, by mistakenly taking it at night and thus skipping it this morning, the molasses remains in my head even now, at 3 in the afternoon. I’m looking forward to having my usual energy back tomorrow.

I feel sad when friends tell stories of family members who have gone off their meds entirely, without a doctor’s input. I know how they feel, because I’ve done that too. When I was first diagnosed in 1990, I hated the meds I took, and it was only the unswerving (and wise) dedication of my parents that ensured that I kept taking them. In 1996, I was living alone and thus had the opportunity to single-handedly choose to “taper off” the clozapine I was taking, hoping that I would be better without it. That was a disaster. I had a relapse, lost my job and then-career path, and spent 2 weeks in the hospital. It took me about 2 years to get somewhat stable again.

I’m such a fast learner that I tried that a few more times. Lucky for me I was able to resume my med doses again, each time, before any more serious issues developed. Whew!

Now, after not messing with any doses for a year and a half, I feel stably great about life.

If you take psychiatric medication and don’t like the way it makes you feel, I encourage you to talk with your doctor about it, and try to work it out with him or her. Even if you find that staying on the same med dose is the best choice for now, it doesn’t have to be forever. Check out articles on the research of Drs. Francis Lee and Andrew Pieper to learn about some of the incredible possibilities on the horizon.

I have known over a dozen psychiatrists, and every one of them knows his or her stuff and really does care. One of them, Dr. Vikaas Sohal, told me “it is a privilege to work with patients during challenging parts of their lives.” A doctor like that is there for you. Building trust with one is worth it.

A Turning Point

November 13th, 2009 by Brandon Staglin

I have schizophrenia, and I talk about it. I work for my family’s charity, International Mental Health Research Organization, as a web manager and spokesperson. Being so public with my illness has until now brought me many kind words along with a vague satisfaction that I might be doing some good to reduce stigma, but lately I’ve noticed my own growing ambivalence. It’s been painful to think much of the time about a sickness that I have, even though it might help others.

Yesterday morning I had an epiphany–

What if I didn’t have to talk about this any more?

A smile lit my face immediately. What a relief to conceive of a life free from perpetually thinking about medical issues!

I called my Dad (my boss) and, thank goodness! He agreed that that was fine; my core job was really maintaining our family’s winery website (I wear a few hats). I could focus on that. Yesss!

That day passed wonderfully. I had myself back again. I didn’t have to worry about a professional life filled with gloom. I could perceive all kinds of good in the world again. I felt like I did when I was much younger and life was filled with possibility.

Meanwhile, IMHRO went on. A few months before, we had hired the dynamic team of Jennifer Weigel and Laura Levy to produce a video for us about our Music Festival for Mental Health. It included interviews with the donors, vintners, politicians, and activists who supported our effort as well as my mom, dad, sister and me. Coincidentally, it finished that very day. I watched it that night with my wife, and when it was done, she clicked on some related videos on YouTube.

That was when things started to happen.

We watched one called “Schizophrenia – Heather” about a young woman with a severe case of the illness. As I watched, I felt a kindling compassion for the poor, beautiful creature and her parents who watched her helplessly in the throes of psychotic confusion.

Now she is the kind of person I want to help.

As we watched more videos, including a speech by the lovely, warm and articulate law professor Elyn Saks about her own experiences with schizophrenia, I started to realize not only that I could but that I wanted to make a difference in this field. This was new–instead of doing it because I should, the action would come from me. I went to bed thinking about that possibility.

I woke up this morning in quite a state. What if my Dad had already decided to remove responsibility for the IMHRO website to someone else? If I really wanted to be active in IMHRO again, this time for good, I would have to tell him soon. I perceived that I needed to make a decision soon.

I paced for half an hour before my wife sagely suggested that I go for a run to clear my head.

I did. Miraculously, it worked. When I came back I could see an entirely new view:

Living a life which is founded in compassion for people and service to a cause I believe in is a much better option than an aimless life of self-gratification. Although I may give up some fun, my heart tells me that it is more than worth it.

Now life is still filled with possibility. This is a shared journey. This path will unfold in unknown and wonderful ways. I can’t wait to see where it will lead.

Why not join me on this path? More to come.



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