A journey through schizophrenia, from researcher to patient and back

SAN FRANCISCO — The patients who came into the schizophrenia research lab grew easily confused. They struggled to complete simple tasks. Brandon Chuang, a research assistant just out of college, liked working with them, but found them a bit odd.

Within a year, he would turn out to be one of them.

Just as he was becoming a key member of the lab, Chuang suffered a psychotic break that left him sensing conspiracy at every turn; he was so convinced his computer was being hacked that even a routine update from Dropbox shook him. His thinking, so sharp through high school and college, grew so jumbled that he perceived romantic involvement where there was none and kissed two female colleagues in the lab. At one point, he attacked his own brother.

The diagnosis of schizophrenia shocked his friends, family, and even his employer, Dr. Josh Woolley, a psychiatrist and schizophrenia expert at the University of California, San Francisco.

Most of all, it frightened Chuang.

Chuang, now 28, has been at times in denial, deeply despondent, and even briefly suicidal since his diagnosis in 2012. He sat down with STAT in the lab where he works, within sight of the Golden Gate Bridge, to describe his struggle, sharing painful and personal details about his illness in hopes of helping others.

“Mental illness,” he said, “is not something that should have to be kept secret.”

Among the grimmest of mental health diagnoses, schizophrenia — which afflicts some 2.6 million Americans — has long been thought to portend a life of institutionalization, homelessness, or, at best, menial labor. Medications can help control hallucinations and delusions, but there are no good treatments for other symptoms, such as slowed thinking, difficulty interacting, and a flat affect that strips emotion from the face and the voice.

In recent years, patients and psychiatrists have begun to recognize that many people with schizophrenia can nonetheless function at a high level and even excel in demanding jobs.

But Chuang couldn’t see that at first. Having worked with schizophrenia patients, he couldn’t accept his diagnosis; he feared becoming one of the muddled and isolated trial subjects who came through the lab. “It was pretty scary to think I might become like that someday,” he said. “Almost like a nightmare come true.”

A mind ‘covered in mud’

Brandon Chuang seemed to have it made.

Born in Cupertino, the heart of Silicon Valley, into a family of high-achievers, he fit right in: He sailed through high school and rang up strong grades at UCLA, where he majored in molecular biology, had a girlfriend, joined a fraternity, and worked in a lab studying muscle filaments. When he graduated in 2010, he planned to go to medical school. Despite strong grades and test scores, he didn’t get in anywhere.

Frantic for some direction, Chuang applied for research jobs to beef up future med school applications. Woolley came through with an offer of a volunteer position. The lab aims to study the effects of oxytocin — the so-called “love” hormone — to see if inhaling it might enhance trust and strengthen social abilities in people with schizophrenia.

Chuang loved the work. His first six months in the lab — through the spring and summer of 2011 — went well. He ran research subjects through tests and trained others to do the same, and he started analyzing data, work that would earn him coauthorship on several publications.

“I totally depended on him,” Woolley said. “He was my right hand.”

Then things got strange.

His mind just stopped working and felt, Chuang said, like it was “covered in mud.” He started to believe that people — even those closest to him — were out to get him.

Someone was hacking his computer, he was sure of it. And sending him coded messages by altering his Facebook feed. He thought Woolley was in on the conspiracy as well.

Woolley was getting worried. This wasn’t just normal “young adult angst,” he said. These were delusions.

The average age of onset for schizophrenia in men is between 16 and 25. Chuang was 24.

Chuang saw a psychiatrist and was diagnosed — incorrectly, Woolley believes — with depression and social anxiety disorder. He was told to attend group therapy. That type of misdiagnosis isn’t all that rare: Physicians know how bad schizophrenia is, and may be so worried about burdening their patients they are reluctant to diagnose it, said Dr. Demian Rose, who helped start a clinic at UCSF to promote early diagnosis and treatment for schizophrenia.

The group therapy wasn’t nearly enough. Chuang was unraveling. Woolley, frustrated, made an irate call to Chuang’s psychiatrist but was only able to leave a message.

“I felt, here he is, slipping away in front of my eyes,” Woolley said, “and I can’t get him the treatment he needs.”

A call to the police

The National Institute of Mental Health has estimated that 40 percent of people with schizophrenia go untreated, even though early treatment — especially limiting the duration of active psychosis — is considered key to preventing the return or worsening of symptoms. Chuang was lucky to have a boss with expertise in the field to advocate for him.

After more consultations, he was diagnosed with schizoaffective disorder, which includes symptoms of both schizophrenia and mood disorder.

Chuang started taking Prozac and Risperdal. The side effects were terrible: anxiety, loss of focus, depression. But the paranoia went away and he became productive again.

So he promptly stopped his meds.

“I decided I was cured and didn’t think I had the illness anymore,” he said.

It was a bad decision. His brain “shut down,” he said. He couldn’t have conversations. And then one night, while watching a Giants playoff game with his parents and brother Kenji, he lost it. His brother had asked if he was OK. Chuang responded by trying to tackle him. He overturned a table, sending french fries and drinks flying. Kenji was stunned.

“None of us knew,” he said.

The family had noticed that Chuang had been withdrawing socially — something they now know is a classic early sign for schizophrenia — but at the time, they didn’t think it was anything serious. “We’d never dealt with any mental illness before. None of us had any idea, other than he’d been getting quiet,” Kenji Chuang said.

The family couldn’t calm Chuang. They tried to get him to a hospital. He refused. Fearful and bewildered, they called the police.

When officers arrived at the house, Chuang charged at them. He was led away in handcuffs.

The family had no idea what would happen next.

The darkest of days

The police took Chuang to a psychiatric holding facility. Chuang calls the entire year of his diagnosis and serial hospitalizations “the dark days,” but this day in October of 2012 was the darkest by far. The facility held people who were screaming, cursing, muttering, who had to be restrained. “It was kind of like a freak show circus,” said Chuang. “I was afraid this was somewhere I’d be permanently.”

After a night, Chuang was transferred to a psychiatric hospital and recovery center. Wanting to get out as soon as possible to re-submit his medical school applications, Chuang worked hard to prove how OK he was. He took his medicine, but looking back now, he acknowledges denial: “I had trouble admitting I had an illness.”

Released a few weeks later, Chuang accompanied his father on some errands. Within hours, he started screaming — the only way, he said, that he could relieve an immensely painful headache that had come on out of the blue. His dad returned immediately to the psychiatric holding facility.

“I was just screaming. It was so bad, I asked a nurse for medication to commit suicide,” Chuang said.

He was sedated and the pain — he’s still not sure of the cause — went away. Chuang was transferred to another hospital.

“This time,” he said, “I knew something was wrong.”

His new doctor tried a new medication: the antipsychotic olanzapine, which is thought to temper symptoms by blocking the brain’s dopamine receptors and also acting on serotonin receptors. It sedated him somewhat, but it let his brain function.

Even from the hospital, Chuang begged to go back to work. He needed some meaning in his life, something that connected him to the person he used to be.

Woolley, however, was nervous. He wanted to help Chuang, but he also had to think about the safety and productivity of his growing lab and the vulnerable patients who came in for tests. He had to think about privacy and data security.

“No one,” Woolley said, “taught me how to deal with this.”

In search of direction

Woolley knew it was very unlikely Chuang would be dangerous. Studies show the vast majority of people with mental illness are not violent towards others; in fact, they’re more likely to be victims.

And the whole point of his research was to bring people with schizophrenia back to society, to help them function in work and in life.

But would Chuang’s illness disrupt the lab’s work?

Woolley discussed the case with his mentor, Dr. Sophia Vinogradov, the vice chair of psychiatry at UCSF and an expert on cognitive dysfunction in schizophrenia. The two agreed that Chuang should be invited back.

“I really wanted to do what was best for him,” Woolley said. “He’s like my nephew. And he has continued to impress me with his grit, his drive, his determination.”

Chuang had no doubt that he belonged back in the lab. Without his work, without med school, he felt lost. “I wanted to have direction,” he said. “I wanted to have a successful career and contribute.”

It’s a perfectly legitimate goal for someone with schizophrenia, said Elyn Saks, a professor at the University of Southern California’s Gould School of Law. She went public with her struggle with schizophrenia in a 2007 book called “The Center Cannot Hold: My Journey Through Madness.”

Saks, now 60, struggled through psychosis and hospitalizations as a young woman before being stabilized on medication. Early on, she’d been told she should seek simple work, like being a cashier, despite her degrees from University of Oxford and Yale Law School.

“That would have been devastating,” said Saks, a MacArthur genius award recipient. “I think we make a mistake when we tell people to lower their expectations dramatically.”

Saks credits the deep intellectual stimulation of her work as helping with her recovery and thinks the same may be true for Chuang, as well as for dozens of other academics, professionals, and even CEOs who have schizophrenia yet still hold down high-powered careers. “I think work does stabilize most people,” she said. “It gives us a sense of focus and well-being.”

Slower, blurrier, but healing

In 2013, nearly a year after his first psychotic break, Chuang returned to work in the Woolley lab, which sits in an aging outbuilding at the VA Medical Center on the western edge of San Francisco.

Handsome, trim, and clean-cut, in crisp jeans and sneakers, Chuang could easily pass for any of the young techies who populate this city — except instead of having the logo of a startup, his hoodie is emblazoned with the chemical formula for oxytocin, the molecule he studies.

It’s known to promote bonding and feelings of trust, so Woolley and his team have been squirting the hormone into the noses of research subjects with schizophrenia. The patients are then tested on various tasks, including how their faces respond to emotional videos and whether they can detect sarcasm and white lies. Woolley says studies of the drug are in their infancy, but he holds out hope that oxytocin could become a novel treatment for the social isolation and flat affect so characteristic of schizophrenia.

Chuang hasn’t participated in the research as a patient, but said he’ll consider it.

In the meantime, he’s stayed on olanzapine. He feels like it slows his brain and blurs his focus at times, but it helps. He’s more stable. But not totally so.

Every so often, he worries, just a bit, about the hacking conspiracy again. Or tries to kiss someone he’s not dating. He finds big crowds too stressful — unfortunate, because he is a huge Golden State Warriors fan. In crowds, he said, “my brain would feel like it was on fire.”

But he’s forced himself to expand his horizons. He even joined Toastmasters.  Chuang feels strongly that by pushing himself to socialize and speak publicly, though it scares him, he’s helping re-wire his brain in a healthier way.

“There is plasticity in the brain. It can change over time if you constantly push,” he said. “I will not let this illness take my life.”

Chuang also performs improv once a week. At first, it was so difficult he sometimes froze and fled the stage. Now, he’s less self-conscious and he’s learned to capitalize on his sometimes deadpan affect to get even more laughs. At one session, he wove together a bizarre comic tale involving a Renaissance fair, a soldier and a kale smoothie — and “killed it,” according to labmates who attended.

He’s even running a pilot program to teach improv to veterans with schizophrenia, in the hopes that comedy will help them relate better to others.

For the past two years, Chuang has also worked with the National Alliance on Mental Illness, or NAMI, to speak to different groups — kids in high school, suicide hotline volunteers — about his experience. “It feels good to talk about it,” Chuang said. “It makes me feel this was not all wasted.”

Last year, Chuang decided to practice one of his talks in front of his lab.

It was the first time his colleagues found out about his schizophrenia.

“It was kind of a shock to a lot of people,” said Jennifer Akazawa, the lab’s manager.

The talk itself, in front of hundreds of people at NAMI’s national convention, received a standing ovation.

Out in the open

As Chuang regained his footing, he began to rethink his career options. He’d recently tried again to apply to medical school and had been rejected across the board. He thought instead he might want to help find treatments for the very things he suffers from — the social deficits and extreme loneliness that can accompany schizophrenia.

So he put himself out there again, applying to 14 graduate programs in clinical psychology or cognitive science. Still ambitious, he applied to only the top programs, those with acceptance rates in the low single digits. “I was shooting for the stars,” said Chuang.

He’s not alone. A number of people who treat mental illness also suffer from it, said Jennifer Boyd, an adjunct professor of psychiatry at UCSF who treats patients at the VA Medical Center, mentors Chuang, and has bipolar disorder. While clinicians have long kept quiet about such matters, Boyd conducted a soon-to-be published survey that found 77 providers with mental illness within the VA nationwide, mostly with depression, anxiety, or post-traumatic stress disorder.

The population of providers with mental illness is big enough that there is a huge debate on whether they should tell their patients about their own experiences, Boyd said.

“People say, ‘You don’t look like you have mental illness,’” Boyd said. “I say, ‘Yes, I do. We look like anybody.’”

As Chuang prepared his grad school applications, an urgent question dogged him: Should he disclose his diagnosis?

He’d been advised not to when he applied for medical school. Schizophrenia just had too much stigma attached. But so much of Chuang’s resume — the time outs, the passion to study schizophrenia — made more sense in light of his diagnosis.

So he took an experimental approach and a big risk. He disclosed his illness on half of his grad school applications.

He did not want to hide any more.

In 25 years as a professor, Ann Kring has never seen anyone disclose schizophrenia on a grad school application. Kring is chair of UC Berkeley’s psychology department and an expert on the emotional, social, and cognitive deficits in schizophrenia.

She didn’t see Chuang’s diagnosis, discussed in his personal statement, until she was already deep into his application and had reviewed his grades, his publications, and his research experience. He was a top-shelf applicant.

“I thought this guy is going to be an amazing graduate student. And to do all this on top of being diagnosed just a few years ago, was just frankly inspiring,” she said.

UC Berkeley was the lone graduate school to accept Chuang. He will enroll in the five-year program this fall.