Steinberg Institute
Brandon Staglin

Brandon Staglin: Living — and thriving — with schizophrenia

Posted on Monday, July 17, 2017

The Staglin family of Napa Valley has been a driving force in brain health research for two decades, and a steadfast partner with the Steinberg Institute on efforts to advance early detection and intervention of mental illness. Today, we profile Brandon Staglin, whose experience with schizophrenia inspired the family’s journey.  

By Deborah Anderluh
Steinberg Institute

RUTHERFORD, CA – Seated in an office at his family’s Napa Valley vineyard, silhouetted by sweeping views of the rolling green horizon, Brandon Staglin recounted the first of his two psychotic breaks.

It was 1990. He was 18 years old, back home for the summer after his first year at Dartmouth College. He recalls feeling stressed. He had broken up with his first serious girlfriend a month before. He was coming up empty in his efforts to land a summer job.  His parents and younger sister were traveling in France – he had stayed behind for the job search. And he found himself drowning in his sense of failure: Was he worthy of an adult relationship? Was he even capable of getting a job?

The questions looped in his head as he tried to sleep, and the anxiety surged upward, palpable and sharp. And, then, in an instant, something snapped. The tension released. And he was left with the unshakeable sense that the right side of his brain was gone. Specifically the right – not the left. It had bled out somehow, and with it, all the emotional markers that helped inform his identity: His love for his parents, his affection for friends – simply gone.

The days that followed flowed in a haze of confusion and terror. He remembers driving through the night, hoping to find a feeling that was familiar, and getting pulled over by police. He spent the night in the station, instinctively covering his right eye and right ear, convinced another personality would try to enter through those portals. Police released him the following morning, after a breathalyzer test came back negative, and he found his way home.

Hours passed, and still he couldn’t sleep, so he called an ambulance. At the hospital, the intake nurse struggled to understand his request for a room. He told her he needed sleep, and to feel safe, and as he became more agitated and insistent, she threatened to have him restrained. So, he left and called a friend.

The friend took him in, and sometime around dawn, he finally fell asleep. But only for a few minutes. And when he opened his eyes, he registered, with horror, that the other half of his mind now was missing, as well. He ran from the house, screaming in anguish. Later that day, he was admitted to a psychiatric hospital for what would be a three-day stay.

A few weeks – and several psychiatric consultations – later, his parents received a diagnosis that at the time seemed dire: Brandon had schizophrenia. “They did not tell me at the time,” he said. “I think they were concerned I would not accept it, being such a scary term. And I probably would not have.”

Twenty-seven years later, Brandon Staglin has forged a leading role in the world of mental health advocacy, and gives face and voice to the progress and promise of this fast-developing field of research. In thoughtful, articulate prose, he bears witness to the recovery possible for people living with serious thought and mood disorders when they have access to early intervention and specialized treatment services.

With his parents, Garen and Shari Staglin, Brandon, 45, has been a guiding force in creating two powerhouse nonprofits dedicated to advancing the science surrounding brain illness and injury, and enabling ever-better, more targeted diagnoses and treatment. The family’s Rutherford-based nonprofit, One Mind Institute, raises millions of dollars annually that has been used to leverage more than $260 million for research into the biological underpinnings of mental illness, biomarkers that provide a means of early detection, and innovative treatments for illnesses such as schizophrenia, bipolar disorder and depression.

A sister nonprofit called One Mind, based in Seattle, supports an interactive data portal that enables scientists to partner in clinical trials on an international scale.

The results of their efforts are both concrete and profound. Each year, One Mind Institute awards grants of up to $250,000 through its Rising Star Awards to support scientists whose brain research shows special promise.  Among the breakthroughs that have resulted:

  • A prototype “pacemaker” for the brain that has proven effective in eliminating depression in lab mice. Work continues on development for human use.
  • Discovery of two biomarkers that serve as early warning signs of oncoming psychosis.
  • A deeper understanding of brain chemistry that will enable development of medications for bipolar disorder that carry less dangerous side effects.
  • The use of brain imaging to identify distinct subtypes of depression, work that will enable doctors to provide more personalized diagnoses and treatment.
  • Discovery of a new class of compounds that will lead to development of faster-acting antidepressant medications.

For Brandon, who serves as communications director of One Mind Institute, the work is both rewarding and deeply personal. His parents launched the family’s fundraising efforts in 1995 – five years after his diagnosis – because they were troubled by what they experienced in the early years of his illness: major gaps in understanding about the biological causes of mental illness; medications that were ineffective or came with punishing side effects; uneven access to cutting-edge care.

“They saw that the state of treatment for mental health – there are a lot of holes in it. It’s not always effective… and it needs to be improved,” Brandon said. “They felt the most efficient way to do that was to fund research.”

Looking back, Brandon can see early signs that his brain might be vulnerable to psychosis. The family moved to Lafayette in Contra Costa County in 1975, when Brandon was 3. He recalls a happy childhood: excellent grades, intramural soccer, camaraderie in his wilderness and philosophy clubs. His father, Garen, was a successful venture capitalist; and his mother, Shari, worked for years in government before becoming CEO of the vineyard they purchased in 1985.

Brandon has a vivid memory of a December ski trip to Utah the year of the vineyard purchase. He was 14. His grandfather had leukemia and was in the final months of life. Brandon lay in bed, pondering what it meant to be alive, and what it would mean not to be. He drifted off, then opened his eyes a few minutes later, uncertain whether he was awake or dreaming. He recognized his surroundings, the stars outside his window, but the world felt invalid. He put on his headphones and what he knew to be his favorite song — Bruce Springsteen’s “Born to Run” — but couldn’t access his emotions.

Frightened, he woke his parents. They helped calm him, and the next morning he felt like himself. “I was ok again, but I was kind of wary that this sensation might return, that I might ‘crack up’ someday,” Brandon said. “It’s a fear I had from that time, until I actually did.”

It would take far longer to rebound after his full-blown psychotic break in 1990. After a couple tries, his parents found a psychiatrist he was comfortable working with. They experimented with antipsychotic medications – one that clouded his head with searing sensations of thunder and lightning. Another that prompted a seizure. And neither helped control the terrifying thoughts crowding his brain: a near-constant string of “if-then” fears — that a specific action, like exceeding a set number of bites of food, would have fatal repercussions; a palpable sense of spirits inhabiting his body.

After three months of trial and error, his doctor hit upon a medication regimen that helped stabilize him. And after six months, he returned to his engineering studies at Dartmouth. He continued to see a psychiatrist, and stayed on his meds. But the irrational fears remained, a disruptive background dialogue that had to be edited out. And worse, he was afraid to tell his friends what had happened, or the strange thoughts that continued to plague him. “That became very tiring,” he said. “The fatigue that accrued, trying to hide those (thoughts), was debilitating.” His grades fell his first two terms back, and he became more withdrawn.

But Brandon persevered. He threw himself into his studies, and graduated in 1993 with a dual degree in engineering and anthropology. He landed a dream job at a Palo Alto engineering firm, designing communications panels for satellites. “I loved that job. It’s what I always wanted to do,” he said. “I wanted one day to design the first starship, the first engine to allow people to reach other planets.” After three years, he applied and was accepted to Stanford to pursue an advanced degree in engineering.

And then came the second break.

In retrospect, he can see he took a risk. He had cut back on his antipsychotic medication, Clozapine, to prepare for the late-night study graduate school would require. “I knew I would have to sleep less than the nine hours a night I was at the time; Clozapine was making me do that,” he said. A few months after lowering his dosage, he was wracked with stabbing pains in his forehead. It was a new form of hallucination, but the pain was agonizing and real. He became erratic and distracted. He took a leave from work and later resigned.

“At that point, I went back in the hospital,” he said.

At UCSF, he started with a new psychiatrist and new antipsychotic, and eventually stabilized. But the illness had weakened his cognition. For a year, he rented an apartment in San Francisco, not far from the hospital, so he could attend outpatient therapy. He took part in a clinical trial with noted psychiatrist Sophia Vinogradov that employed cognitive training exercises to strengthen the neural pathways in the brain.

The training is rooted in the theory that for the brain to experience the world in a healthy, functional way, its various segments must send and interpret signals properly. In a brain damaged by schizophrenia, these circuits are weakened, particularly auditory pathways. The training, done via computer, is in the form of games that challenge a patient to differentiate among auditory tones. Brandon took part daily, five days a week, for 10 weeks.

“I actually did get a lot better at conversation, understanding what was said to me and the appropriate response,” he said. “That all helped with my cognition, and I was able to get back to work after six more months, and to lifelong friends, as well.”

He was stronger – but not strong enough to return to the stresses of engineering. For a time, he worked with a friend at a marketing startup, and in 1999, joined his family’s vineyard as webmaster and later director of marketing communications. A few years earlier, his parents had initiated their fundraising efforts with the first in what would become an annual fall Music Festival for Brain Health, a weekend of wine, music and scientific dissertation that draws top scientists and donors from around the globe.

Brandon Staglin performs at a Napa Valley “This is My Brave” show in May 2017.

Over two decades, with Brandon organizing the scientific symposiums, and his parents and sister, Shannon, doing event planning and outreach, the festival has grown into one of the nation’s most important fundraisers for brain disorders.

In 2008, building on the festival’s success, the Staglins launched the nonprofit that would become One Mind Institute. One Mind followed in 2011. Like the rest of the family, Brandon continues to work at the winery, even as he travels the country representing the institutes. This fall, he’ll embark on a year-long program at UCSF to get a master’s of science in healthcare administration. His research project for the program will intertwine with his latest brain health endeavor: He is working to forge a data-sharing network that will allow the clinics in California that specialize in providing early detection and intervention services for psychosis and mood disorders to compare outcomes and build on successful practices.

There have been no further psychotic episodes, though he still finds himself editing out errant thoughts he knows to be an outgrowth of his illness. Along with his medication regimen, he has found meditation to be a stabilizing force, as well as playing guitar. And he did make another change in his antipsychotic– one that led to yet another level of recovery. The move to Abilify, in 2005, gave him more access to his emotional range. He became more interested in socializing ‑ and in meeting women. “I hadn’t dated for years and years, since I had my second episode” he said. “I pretty quickly was able to find somebody.”

He met Nancy Abreu at one of the vineyard’s harvest parties – she was the sister of the Staglins’ vineyard manager. They fell in love, and married in 2009. They have a home in Napa, and a gorgeous dog, Cooper.

Deconstructing his road to recovery, Brandon credits three crucial elements: He wasn’t lost to his illness – he had enough insight to know something was wrong, and to take medications despite the side effects and misgivings. He had a healthy dose of ambition that drove him to get well so he could get on with his life. And his parents were with him each step of the way, unwavering in their love and support.

He’s not building starships, but Brandon Staglin believes he has found his purpose.

“It’s not what I planned as a teenager, but the things I’m doing really bring a lot of meaning to my experience” he said. “It’s helping improve the state of brain health care, helping people who experience brain health challenges, and maybe being a source of inspiration for people.”

For more information on One Mind Institute, go to onemindinstitute.org.

 Deborah Anderluh is communications director at the Steinberg Institute, a Sacramento-based nonprofit dedicated to advancing sound public policy and inspiring leadership on issues of mental health. For more information, visit our website at steinberginsitute.org.  

 

 

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