Posts Tagged ‘schizophrenia’

The Mystery of Faith

Wednesday, July 28th, 2010 by Brandon Staglin

In a conversation with a very wise young friend of my sister, I once quoted Shakespeare: “There is nothing either good or bad, but thinking makes it so.” She responded, “Actually, some things that happen ARE bad.”

A string of troubling events in the lives of people I love has brought me back to this memory. Lately I’ve often felt concerned and anxious, and I’ve seen that my sister’s friend was right.

Brandon on the trailSince I was a child I have lived under the mistaken impression that I can bootstrap my way out of feeling bad by rethinking situations. A few years ago this belief was the basis for a creative writing class memoir I wrote called “Lizard Finds his Feet.” It was a supposed coming of age story about me failing to develop the leadership ability I wanted while a student on an Outward Bound wilderness course, feeling confused and frustrated, and thinking about it until I was satisfied that I could lead by following! When my classmates read it and commented that they pitied my character in the story, it devastated me. I realized that my misplaced faith in my analytical abilities as the answer to all my problems had kept my head in the sand throughout much of my life.

I am pretty sure my self-absorbed focus played some part in me developing schizophrenia. And, I believe that my continued frequent reliance on this faith has been a source of continued symptoms.

The thing is, the issues that cause my anxiety are bigger than me. No wonder I can’t resolve them by internal effort alone.

When I had that epiphany thanks to my classmates, I decided I’d better open my eyes and start learning. In the intervening years, I have, thankfully, learned a lot, including to care about other people and how they feel, and I do feel healthier.

But here’s the strange thing I’ve been getting to. Growing and getting healthier takes external awareness as well as internal. But, one thing I often do to help myself gain perspective might seem at first glance purely internal: prayer.

This morning found a moment to stand quietly, lower my gaze, and, in my mind, thank God for what are the guiding stars in my life: my wife, our dog, our extended family. I let my thoughts and feelings flow from there. A few moments passed as I joyfully reflected. Then, I felt refreshed, and renewed, centered in love. I saw the external world and all its problems with serenity. When I pray, this refreshment almost always comes.

I honestly cannot fathom how this change in perspective works except that it must be more than a purely internal process. I think it works in part because, for me, God and love are bigger than me. Maybe my love and faith are a means to unite what matters most in my internal and external worlds.

It works, even though I don’t fully understand. :)

Can anyone out there relate?

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

Thursday, 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

Tuesday, 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.

A Turning Point

Friday, 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.