Mental Health

Coming To Terms With My Grandmother’s Schizophrenia

In India, where mental illness is taboo, one grandson learns to better understand his grandmother.

Grandmother died while I was sleeping.

I remember hearing a ruckus, then people wailing. When I came out of my room to see what was going on, the first thing I saw was my father sunk in a chair, crying into his hands. My mother and other families were nearby, and they were all weeping too.

My grandmother lay on a cot on the floor with a white sari draped over her. Her face, gray and cold, looked like a stone.

I thought my grandmother had died crazy. For years, she had heard voices and talked to imaginary people that only she could see.

In college, I even once told a therapist that I thought ‘madness ran in my blood’, and that my grandmother was just another victim of a family curse.

It was this therapist who suggested to me that there might be another answer than a family curse of madness: my grandmother might have had schizophrenia.

At that point, I had no idea what schizophrenia was. Mental abnormality is a taboo in India, where I was raised. There, any person with a mental health issue is often lumped in under the umbrella term ‘madness.’

Mental abnormality is a taboo in India, where I was raised. There, any person with a mental health issue is often lumped in under the umbrella term ‘madness.’

Because there’s such strong stigma around mental health issues in India, data on exactly how prevalent schizophrenia and other conditions are on the subcontinent is hard to come by. However, in 2016, the National Mental Health Survey of India stated that one in every six people in India needs help with their mental health. Yet very little in India is being done to address this mental health epidemic; in fact, only two major political parties in the 2019 even have mental health as an issue on their agenda.

As I have learned more about schizophrenia, I have come to view my own grandmother’s ‘madness’ in a new light, and wonder if we might have done more for her if we hadn’t felt the stigma of her condition so acutely.

As it was, we spent most of our time trying to keep her locked up in our apartment.

I remember once, she woke up in the middle of the night, utterly convinced her brother was waiting at the end of the street in his red tractor to pick her up and take her home. She rattled the blue steel gate that separated our apartment from the outside, demanding to be let out. “I want to go home,” she said, heedless to us trying to tell her that she was home.

Of course, now I understand that she wasn’t really home. The home she meant was the one she’d grown up in, and while we saw the front door gate as a happy entryway, she thought of it as a cage.

As for her brother, he wasn’t waiting outside: he hadn’t so much as called her for years. “As far as he’s concerned, she’s just mad,” my mother used to say.

“As far as he’s concerned, she’s just mad,” my mother used to say.

One night, my grandmother escaped the apartment. There had been a flood, knocking out the electricity in our housing complex, and we’d been unable to get more of the pills she took to subdue her because of it. I forgot to lock the blue front gate, and so she slipped out in the night.

Then they did. She was at a railway station, her hand mysteriously wrapped in a sling. When she came back, she barely spoke, except to sob at night and speak in a language we couldn’t understand. We have no idea what she did for the two days she was gone, and there was no reasoning with her not to try to escape again: all we could do was chain the blue steel gate even tighter, so she couldn’t escape.

Stories like this were how I thought of my grandmother for many years. But once I learned more about schizophrenia, I found myself trying to focus less on moments like this, than the way she showed me her love when I was younger: letting me climb into her bed at night, cuddling up to her in her cotton sari as she told me stories, and smelling the scent of lilacs that always seemed to cling to her like a mist.

But once I learned more about schizophrenia, I found myself trying to focus less on moments like this, than the way she showed me her love when I was younger.

When grandmother died, I went to my neighbor’s garden and picked her some lilacs. Then I used them to decorate her thick gray hair. When they cremated her remains on the funeral pyre, the lilacs filled the evening air and it smelt of her.

And over the smoke, I saw her brother standing there, watching her burn with tears in his eyes. He had finally come.

From then on, with a heavy heart, we could leave the blue steel gate unlocked.

PillPack Customer Stories

Subduing The Voices: A PillPack Customer Story

Like many in her family, schizophrenia almost destroyed Monique Jevne's life, until she admitted she needed help.

This Customer Story was brought to you by our sponsor, PillPack, a full-service pharmacy designed around your life.

Most people can’t distill the lessons of a 67-year-life into two words, but Monique Jevne can.

“Treatment works,” she says.

With an approachable face and bright eyes carried beneath a cancer survivor’s salt-and-pepper pixie cut, Monique hardly looks like a person who has spent decades haunted by voices only she can hear. Her resumé, which boasts MIT’s Sloan School of Management as alma mater, and includes high-profile Fortune 500 companies ranging from Proctor & Gamble to Corning to Citibank, wouldn’t suggest she’d done battle with mental illness for most of her life.

“Schizophrenia makes you constantly test the limits of reality, to make sure what you’re seeing is what others are experiencing.”

But since her teens, Monique has battled schizophrenia, a mental disorder marked by a detachment from reality, unclear or confused thinking, and hearing inner voices. Before she accepted her diagnosis, Monique’s schizophrenia compelled her to destroy jobs and relationships, as she followed impulses that made sense only to her.

“Schizophrenia makes you constantly test the limits of reality, to make sure what you’re seeing is what others are experiencing,” Monique says. “I’d do things that were dangerous, like try to shoot a feral cat that had managed to get into the basement, or take off my clothes in public just because I was hot. I’d see dead people sitting on horses wearing capes in front of me, and even though you don’t think it’s real, you still aren’t entirely sure.”

Despite a lifetime spent battling schizophrenia, Monique Jevne’s symptoms are now well-managed thanks to the right medication.

A So-Called ‘Normal’ Life

It’s hard to imagine Monique was ever the sort of person who would storm into a basement with a gun to shoot a cat.

On this idyllic snowy March day, I’m sitting at the kitchen table, drinking coffee, as Jevne works to pour brownie batter into a square, nonstick pan. “I’m not much of a cook,” she admits, checking the instructions on the back of the Duncan Hines box for the fourth time in as many minutes. Skirted in back by a copse out of which wild turkeys occasionally poke their heads and gobble, her spacious home exudes an air of normalcy. Flowers fill windows over puzzle nooks, art hangs tastefully on walls, and guests take off their shoes when they enter the house.

This apparent normalcy—as well as Monique’s loving 23-year-marriage to John Jevne, a former bank trustee turned self-employed financial consultant—is hard-fought testament to the power of compliance. Without the right medications, Monique is blunt about how quickly her seemingly idyllic life would shatter.

“Without treatment, I’d be nuts,” she laughs.

Monique and her husband of twenty-three years, John Jevne.

Schizophrenia As Birthright

In many ways, schizophrenia was Monique’s birthright. Once you hear her story, it’s not surprising she has it. It’s only surprising it didn’t destroy more of her life.

“I’d think to myself: ‘Better not let on. Better act as normal as possible.'”

Born in 1952 in Manville, Rhode Island, Monique’s impoverished upbringing sounds like something from Willy Wonka and the Chocolate Factory. She describes growing up in a one-room shack with a dirt floor and mattresses in the corners stuffed with corncobs. In this home, her alcoholic father—an undiagnosed schizophrenic himself—self-treated himself with any bottle he could get his hands on, while her mother did what she could to make ends meet.

For her family, schizophrenia is a family affliction. In addition to her father, Monique’s uncle Walter heard voices. “He’d come over sometimes and act oddly, saying bizarre things, usually sexual,” Monique remembers. “Otherwise, he lived at an institution. They’d sit him staring at a wall in a chair all day, and when I visited him, I’d think to myself: ‘Better not let on. Better act as normal as possible, or this will happen to you.’“

A younger Monique, before her symptoms were under control.

Playing Normal

Monique was very good at playing normal.

At 17, she went away to college, studying business administration at Boston University, then transferring over to the MIT Sloan School of Management for her post-graduate degree. In her second year of grad school, Monique received a schizophrenia diagnosis. She shrugged it off, graduating and then moving on to companies like Hewlett-Packard as a gun for hire, especially talented at hitting multi-million dollar sales targets.

“It all worked for me until it didn’t anymore.”

For the better part of two decades, Monique managed to achieve a sort of equilibrium between the high-yield, high-pressure demands of her job, and a mental disorder which could cause her to break down at any moment. Sometimes her schizophrenia took a toll on her, but when it did, no one at work noticed. ”I was such a high performer, no one thought anything if I disappeared for a couple weeks, because I’d been hospitalized or was laying in my apartment in a depressed, out-of-body stupor,” Monique says.

During this time, she had two kids, married and then got divorced. Through it all, she ignored her schizophrenia diagnosis, and the medications she was prescribed to manage it.

Monique shrugs. “It all worked for me until it didn’t anymore.”

When she admitted she needed to be properly medicated to keep her symptoms in check, Monique says picking up the pieces of her life was like doing a jigsaw.

From Suicide To Epiphany

When things came crashing down, it happened in slow motion.

Overwhelmed with the stress of balancing her health condition and a high-pressure job, she passed up a promotion opportunity at Hewlett-Packard, which ended up sabotaging her career. “When they call you upstairs, you’re not supposed to say no,” she explains. They assigned her to a department known within HP for being a sarcophagus for once-promising stars turned corporate burnouts. “I knew what that meant.”

Instead, Monique quit, but her symptoms got worse and worse. Her first marriage failed, and she went in and out of the hospital repeatedly for her mental health, until a failed suicide attempt finally made Monique take her schizophrenia diagnosis seriously.

“The way I was raised, you held on to every scrap of pride you could lay your hands on. I just couldn’t admit I was mentally ill.”

“I was always so ashamed of my diagnosis, I couldn’t let it in,” she remembers. “The way I was raised, you held on to every scrap of pride you could lay your hands on. I just couldn’t admit I was mentally ill. But then, during a residential treatment facility, I got to know women like myself with mental disorders, and I realized: they’re not that bad. We’re all just people: we smile, we talk, and we try to survive the best we know how. So maybe it’s okay for me to be this way—it’s not perfect, but it is the way it is.”

“We’re all just people: we smile, we talk, and we try to survive the best we know how. So maybe it’s okay for me to be this way—it’s not perfect, but it is the way it is.”

Treatment Works

Today, thanks to weekly therapy sessions and a medication plan that keeps her symptoms in check, Monique’s a model patient. When she’s not walking her Shih Tzu mix at a jaunty pace with her husband over the grounds near their New London home, she spends her days caring for her 9-year-old son, Devun, teaching classes at WW (formerly known as Weight Watchers), and training police officers on how to recognize signs of schizophrenia through the National Alliance on Mental Illness.

Even so, schizophrenia is still a daily part of Monique’s life, and probably always will be. “Even on the proper medications, I’m in my own world a lot of the time,” she admits. “I take a lot of mood stabilizers and antipsychotics, but the voices are still there: calmer and quieter, but still insistent that I behave in ways that aren’t rational.”

If there’s anything Monique believes, it’s that, without treatment, she would be dead.

It will also remain a family affair. No one knows why schizophrenia tends to run in families—no single gene seems to be responsible—but Monique’s oldest son battles issues with substance abuse and untreated schizophrenia, while her youngest she believes will eventually be diagnosed. And unfortunately, being schizophrenic herself does not make it any easier for her to get through to her sons when their symptoms are at their worst. Two schizophrenics may both be off in their own reality, but it’s not the same reality.

Monique keeps trying. Her dream is to see her disease as well-managed in her family as it is in herself. Because if there’s anything Monique believes, it’s that, without treatment, she would be dead. Treatment, she says, saves lives—both literally and figuratively.

From time to time, PillPack customers volunteer to share their stories with Folks. Treatment is an important part of managing any chronic condition and we are proud to be a part of our customer’s journey.

Mental Health

He Researched Schizophrenia. Then He Was Diagnosed With It.

Brandon Chuang was just 22 when he began researching schizophrenia at U.C. Berkley. Soon, his studies were more personally relevant than he ever imagined.

In 2011, not long after starting a job as a schizophrenia researcher at the University of California, San Francisco, 22-year-old Brandon Chuang began to undergo a severe personality change.

First, it was trouble concentrating. Then came conspiracy spotting. He became convinced that his computer had been hacked by a colleague. Sensing romantic interest where none existed, he attempted to kiss two women at his lab.

At the urging of his boss, Dr. Josh Wooley, a schizophrenia expert, Chuang sought medical help. He was diagnosed with depression and anxiety and prescribed some antidepressants and antipsychotics. But that was hardly the end of it.

The turning point came one night when Chuang, for no reason at all, attacked his brother while watching a Raiders game at their parents’ house. He was arrested, and institutionalized for a week. “At that time I thought, ‘Wow something is actually wrong with me,” Chuang, now 30, recalls.

In America, around 3.5 million individuals have schizophrenia, according to SARDAA, a U.S.-based advocacy group. Three-quarters of them develop it between the ages of 16 and 25. Unlike Chuang, about forty percent of sufferers never receive treatment.  There is a spectrum of severity but symptoms generally include delusions, hallucinations, impaired speech and erratic behavior.

But schizophrenia doesn’t have to derail your life, as Chuang has proven. He has since bounced back after his diagnosis, beginning a six-year PhD program in clinical psychology at Berkeley focused on schizophrenia. Chuang wants to not only beat his illness, but also advocate for other people with schizophrenia, which is why–working with the National Alliance on Mental Illness—Chuang has talked about his experience in front of groups across the country. He also volunteers with Strong 365, an advocacy organization which assists mental health patients early in their diagnoses, and performs improv which touches upon his condition.

We sat down with Chuang to learn more about life after a schizophrenia diagnosis.

As a researcher at the UCSF lab, what kind of work were you doing with schizophrenia patients?

We had a few different experiments looking at how oxytocin influences social cognition. We would give patients oxytocin, wait for half an hour, then run them through different experiments to see if oxytocin improved their abilities. We tested if they could recognize emotions in faces better. There is spatial emotional recognition and auditory emotional recognition, so we also tested if they could recognize emotions in voices better. We also looked at if could they infer other people’s mental states better. We looked at olfactory senses–with schizophrenia, people are also impaired in recognizing smells accurately.

What we found was that oxytocin had mixed effects in these areas. They were better able to infer people’s mental states. Olfactory ability improved, eye-gaze improved. That was one of the main studies that we did. Another study that we did was looking at how a family environment affects people with schizophrenia. Does oxytocin improve the caregiver relationship between the parent and adolescent? We monitored people on the younger side, under thirty, with their parents. We actually gave oxytocin to the parent to see whether it would improve the dyadic interaction between parent and child.

Had you had experience with schizophrenia patients before?

No, I had no idea what schizophrenia was really. I was oblivious to it until I started this research position.

What were your initial impressions of the condition?

I thought it was a pretty devastating disorder. You could distinguish people who had it from those who didn’t. Interactions with them were more difficult. Initiallm  I didn’t really think that I would have schizophrenia. I thought that these people were different somehow. There was some stigma involved. These people were sick, I thought. They needed help.

I didn’t want to accept that I had schizophrenia. I thought schizophrenia happened to other people, not to me.

As you began developing symptoms, what did you think was happening?

Initially, I didn’t want to accept that I had schizophrenia. I thought schizophrenia happened to other people, not to me. What I thought was happening was some biochemical imbalance in my brain. After I took the initial medications I got better and was able to go back to work. I thought I was cured so I stopped taking them. That led me to my first hospitalization, where I fought my brother. That night mind was so slow and I was in so much pain that I thought the only way to get out of it was to physically fight him

Are your memories from those psychotic states very lucid?

It’s still pretty clear in my mind. I wasn’t hallucinating. I can still picture what was going on. It was a very painful experience. I felt very hopeless. Emotionally I wasn’t feeling well, which made me interpret things differently. I didn’t know what to do. I was in so much pain I came up with different ideas as to why I was in such pain. Now I’m better able to do deal with these situations. I don’t have different delusional ideas.

Brandon Chuang studying the effects of oxytocin on the brains of people with schizophrenia.

What happened after that first hospitalization?

At the mental hospital recovery center, they’d teach you skills about how to deal with your emotions and recognize triggers that might cascade into certain unhelpful behaviors. After that training I was released. I was able to calm down a bit and better manage myself. But then, right after, something happened with my brain. I think it had something to do with the medication I was on and also the fact that I wasn’t completely recovered yet. My brain felt like it was on fire. It was sort of like a panic attack coupled with a very painful sensation. It was so bad that I had to get rushed back to the hospital. I told a nurse that I wanted to commit suicide. I asked her for medications that would kill me. I didn’t know what was going on. I was hospitalized again. They put me on another antipsychotic, which I’m on now. It helps a lot more. Ever since that incident my brain kind of feels like it’s on fire. The pain is not to the extent that it was, but I still get the feeling. Especially if I’m out and overstimulated, at a loud event like a sports game. It triggers me. It’s something I’ve had to deal with.

How do you think that your personal experience with schizophrenia impacts your scholarly work?

I can personally understand the reasoning of patients and can be more empathic in terms of why they do the things they do. When I’m reading articles I can be like, ‘Oh I can see why that is.’ I think it bolsters my curiosity into understanding why these different symptoms are involved. I’m better able to internalize what I’ve been taught. And it motivates me to come up with treatments.

When you applied to PhD programs, did you disclose your illness?

I did with half of the schools. I had received mixed feedback from advisors, with some saying that disclosing would be a bad idea because universities would be afraid I wouldn’t be able to handle the workload. Others said it would be beneficial. Eventually, I got accepted into Berkeley, where I did disclose my schizophrenia diagnosis.

What are you studying?

Right now, it’s schizophrenia and looking at social and emotional processes that are involved, and concocting different ideas about how the mechanisms behind these processes are affected. My first research project I have funding for is looking at how our thoughts influence behavior, specifically how changing the way we think about something changes the way we feel about a certain scenario. One of the important things in my recovery was improv theater. That really helped with my anxiety. I wanted to translate that into my research, using how we think about different situations to help us tackle things that make us more anxious about something, like a job interview or giving a speech.

“Just because I have schizophrenia doesn’t mean I can’t go work on things that are important to me.”

How has schizophrenia impacted your career path?

It’s a very stigmatizing illness. Early on I thought it would make it so there’d be limitations on what I’d be able to accomplish. I’ve had to learn to grow out of that and be like, ‘Okay, well just because I have schizophrenia doesn’t mean I can’t go work on things that are important to me’. People who have schizophrenia have such a broad spectrum. Some are very impaired and can’t do much. Then there’s people who are still able to work and live normal lives, who are able to deal with it better.

What is your advice to others with schizophrenia who have those kinds of worries?

I would say to them to not let any kind of limitations you might think you have affect your life in or how you would approach things. Say you wanted to go into science or be an artist. Don’t let a diagnosis affect your dreams and your aspirations. Yes, having schizophrenia sucks. But it’s not something that can’t be dealt with and overcome. There will be things that are harder for you to do. But that doesn’t mean that you can’t do them.

Mental Health

Beautiful Girl On A Distant Planet

In the '70s, my best friend seemed like a prophet and a poetess from outer space. But she had schizophrenia, and as her symptoms worsened, I failed her.

In her cosmology, Bozling was an alien who lived on another planet.

Kathy was my best friend. Bozling, she said, communicated with her telepathically. One fall night, the leaves still magenta under the stars, she said, crying: “Here’s a tear because Bozling’s not here.” Bozling said, through Kathy, that he had the ability to see our past lives, or akashic records, which are a compendium of everything that has ever happened or will happen on earth. Apparently, in past lives, I’d been a gypsy, a water carrier, and a poet.

It was the late 1970s, the days of Ziggy Stardust and The Spiders From Mars. Bowie was more than just a rock musician: he was our high priest, and we dressed accordingly. I had a platinum buzz cut and wore silver platform shoes along with men’s neckties and suits. Kathy draped herself in long silk scarves, and painted the moon and the stars in acrylics and glitter on her jeans. We were 16, and perfectly matched.

Kathy didn’t seem sick then. I thought she was plugged in to a higher realm.

I liked the idea, metaphorically, of an interplanetary being. The whole star man ethos was definitely in the air for us. I was reading Edgar Cayce, the American mystic, at the time, and my boyfriend was practicing to see if he could astral project in his sleep at night. I wrote poetry about Bozling, and Kathy sketched pictures of him; a spaceman with antenna, alone, on a cold planet, not unlike the hero in Antoine de Saint-Exupéry’s The Little Prince.

The whole star man ethos was definitely in the air for us.

Bozling said many of the same things as Cayce: that we have many lives and many masters, that some of us were reincarnated from the lost city of Atlantis. It was around this time that her appearance started to change. She lost weight. Her olive skin grew pale. Her eyes seemed to get bigger. Her make-up, once meticulous, became more outlandish; yellow and pink eye shadow, smudged dark lips. Before she reminded me of an Egyptian princess, now she started to look like a ghost.

Initially, I didn’t pathologize any of Kathy’s new behaviors: not the change in her appearance, her new found psychic ability, or even her interplanetary friend. It never occurred to me that she was sick, that these were classic symptoms of schizophrenia. We’d certainly been chasing transcendence in many other forms including LSD, so the idea she might’ve found it, another way of being, another way of thinking… honestly, I was jealous.

But even if I didn’t think there was anything wrong with her, other people did. Her mother was a registered nurse who’d regularly pull me aside and say: “Kathy’s mentally ill… Why her and not you? You both did drugs” And our friends would say: “She’s so far out there, she’s never coming back”.

In The Inward Journey, Joseph Campbell writes that: “a schizophrenic breakdown is an inward and backward journey… [the person with schizophrenia] has tipped over and is sinking, perhaps drowning…and his long deep dive to the bottom of the cosmic sea to pluck the watercress of immortality, there is one green value of his life down there. Don’t cut him off from it. Help him through.” This is, in fact, what other cultures do. Olga Khazan, writing for The Atlantic says that Eastern and African cultures tend to emphasize relationships and collectivism. There, a hallucination was more likely to be seen as just another point in the schizophrenic person’s already extensive social network.

But Kathy didn’t live in Asia or Africa. She had schizophrenia and lived in America, where she was isolated for it. Nobody else saw the poetry, the imagination, or the possibility of interstellar travel; they saw insanity.

She had schizophrenia and lived in America, where she was isolated for it.

Two years later, and her symptoms worsened. I graduated from high school, but she didn’t. One night, our friend Sam, who owned a local nightclub, took Kathy and I out to dinner at an Italian restaurant. It was famous in our hometown, and Sam knew everyone. Sam and I got pasta, but wraith-like Kathy only ordered a shot of whiskey. When our meals were served, she drained the glass, and then threw up in it; silently and casually.  Sam looked down at his plate, swimming in cheese and tomato sauce and said: “I can’t finish this meal.”

After we drove her home, Sam told me: “I can’t do this anymore.” I’d been her apologist for so long, but I couldn’t argue. I was exhausted.  I respected her visions, but in the face of so much scorn and fear, she really started to slip away. And it didn’t help that throwing up in a shot glass became a routine for her. I don’t know if she did it to shock people, or if she was genuinely nauseous, and I never asked. She did it again, the second time, at Sammy’s bar. After that, it became regular. Everyone avoided her.

Her parents chastised her. I think they had this idea that if she would stop doing drugs, everything would return to normal. And in our close knit Russian and Polish immigrant community on the banks of Lake Michigan, we all tried to hide what went on behind closed doors. Her parents didn’t bring her to see a doctor. Shame kept them from helping her. Shame kept Kathy trapped, alone and isolated.

The U.S. National Library of Medicine reports that the 1970s “was a decade of increasing refinement and specificity of existing treatments for schizophrenia. There was increasing focus on the negative effects of various treatments, such as deinstitutionalization, and a stronger scientific basis for some treatments emerged. For instance, the field of somatic treatments saw a greater and more sophisticated use of lithium.”

I was 19 when I left town, the same time when the lithium landed. Kathy was still a wraith, out of step with the world, but now she was sedated; the cord cut between her and her starman in the sky. Now she, not Bozling, was the alien on a cold planet.

Kathy was still a wraith, out of step with the world, but now she was sedated; the cord cut between her and her starman in the sky.

Cecilia McGough, an astronomy and astrophysics major at Penn State, and Virginia Aerospace science and technology scholar, recently gave a TED Talk about her schizophrenia. She makes the point that this illness is unique to each person; what is true for one person with schizophrenia may not be true for another. The disorder is a constellation of symptoms. She is hesitant, she admits in her TED Talk, to tell other people about her hallucinations because “people usually look at me in fear after I tell them what I see.” She defines her schizophrenia “as someone who cannot turn off her nightmares even when she is awake,” and refuses to acknowledge her hallucinations, even though her own personal Bozling–a Pennywise-like clown that only she can see–was in the audience for the TED talk that day.

I can’t help but wonder about how McGough has managed to accomplish so much, when Kathy struggled so profoundly. Perhaps it’s the meds; the drugs they diagnose people with today for schizophrenia are far less debilitating than the lithium that was used to sedate Kathy. Or maybe it’s McGough’s extensive social network, which “helps her through” her visions.. Perhaps together, this modern collectivism, along with better meds, have allowed her to move through this world in a way that Kathy, born in the wrong place and time, could not.

Kathy ended up alone.

Our tribe, before we left Kathy behind.

After Bozling was banished to the coldest, darkest parts of the cosmos, I heard, through friends, that she spent much of her time at a bar near the railroad tracks, throwing down whiskey shots until eight in the morning. One day, a few years after I moved to New York City, I went to visit her; she still lived at her parent’s house, where her family kept her hidden as much as possible. When I went into her room, she was playing Low by David Bowie. I was shocked by her appearance. She didn’t even look like the same person anymore; the lithium had changed the contours of her once striking profile. My olive skinned gypsy girl with the aquiline nose was gone, replaced by someone pale and hollowed.

Somewhere along the way, we had all failed her. It was partly the shame of our immigrant community where everybody knew everyone else’s business, or thought they did. It was also a time in the culture when mentally ill teenaged girls were hidden from the rest of the world; a mid-century version of the madwomen in the attic. Unlike McGough, she didn’t have a community who would try to understand the unique wiring of her brain.

Even I, her greatest advocate, couldn’t be exonerated from leaving her behind. In my last days in town, she had frightened me. I didn’t think she was tapped into a greater reality anymore. I saw how sick she had become. I wish I’d taken the time to speak candidly with her mother. I think we both hoped that the girl we once loved would spontaneously reappear. Neither of us ever said schizophrenia. As Campbell suggests, there wasn’t anyone to help her through: simply by listening, not judging. That was my role, but I had abandoned it.

About 15 years later, I went back to my hometown  for my grandmother’s funeral. Taking a break from the service, I went outside and smoked a cigarette on a bench, when a middle aged woman with a bad perm sat down next to me. I thought she was a relative. She didn’t say a word, just smoked in silence. Later, my sister said, Kathy saw you at grandma’s funeral. Why didn’t you say hi?

And then I knew: the woman sitting next to me was Kathy. Of course she looked like a relative. I’d once loved her so much.

Mental Health

The Shattered Violinist Pieces Herself Back Together

From homeless scavenger to author and schizophrenia advocate: the descent and recovery of Bethany Yeiser.

Growing up, Bethany Yeiser did everything the right way. In fact, she never even smoked a cigarette. But because of the onset of schizophrenia, she went from being a violinist, scientific researcher and honors student at college to spending four years living on the streets.

Born in suburban Chicago in October 1981, Yeiser was raised in Illinois and Ohio, where she avidly played her violin and excelled at school. At age 17, she headed to the University of Southern California. There she was involved with research on antimicrobial resistance and contributed to articles that landed in such publications as the Journal of Clinical Microbiology.

Bethany Yeiser was a senior in college when schizophrenia struck.

Upon completing her junior year, she embarked on a three-month volunteer trip to Nairobi, Kenya, and Lagos, Nigeria. Subsequent to the trip, she returned to USC for her senior year–very much changed, and not for the better. Neglecting her studies, she started entertaining grandiose delusions about becoming a “Mother Teresa” type of figure who could “radically change the world.”

“I believed I would win a Nobel Peace Prize for the volunteer work I had done and would someday do in Africa,” she says. “I also believed I would someday raise billions of dollars to help the people I lived with in Kenya and Nigeria, and other people in poverty throughout the world.”

Indulging a delusion that a rich man in Boston would help finance future humanitarian endeavors, she parted with the key to her college dorm and flew across the country. No rich man–or, for that matter, anyone– awaited. After a long and fruitless wait at the airport, she flew back to Los Angeles, and became homeless.

Able to hide her predicament at first, Yeiser often spent nights in the USC library. She even managed to make international trips, sponsored by friends who were not fully aware of her situation. Ironically for someone who was now homeless, one of these trips involved attending a U.K. conference on poverty.

Returning to California, she would suffer her own poverty. She slept in an abandoned building that had an unlocked side door, a “miraculous provision from God” in her confused state of mind. At other times, she slept in a churchyard, which she regarded as a “Garden of Eden.” She avoided food banks, opting for garbage cans, from which any unspoiled food and beverage was a gift from “angels.”

Yeiser relates, “When I was experiencing symptoms of schizophrenia, managing the illness and simply trying to make it through each day was a full time job, and took up all of my energy. School or work was impossible.”

“Managing schizophrenia was a full time job… school or work was impossible.”

Eventually, she was beset by voices in addition to her delusions. Some voices insulted her, while other voices told her she’d become one of the world’s most influential people. These voices could reach a screaming intensity, as she proceeded to sleep outside in the rain.

During her years of homeless travail, she refused any contact with her family. Like many who suffer from severe mental illness, she initially was unable to accept the fact that she was mentally ill, even though she’d been reduced to scavenging for food in garbage cans within a two-minute walk from the USC campus where she had excelled academically.

Due to mental illness, Yeiser ended up homeless and suffering from delusions.

Hallucinations were also a factor: When she looked in the mirror, her own face became that of a cartoon character. Even the date on a newspaper became distorted, as her tenuous grip on reality further slipped.

Her first hospitalization took place in Los Angeles, where police had confronted her for screaming back at voices only she could hear. “When I was arrested, I did not understand what was happening, and I thought the arrest was a mistake. I was confused, in my illness,” she recalls. “I feel very embarrassed by what happened,” she adds. “But I do not feel guilty.”

Yeiser feels that the law enforcement community should make more effort to train its officers about how to recognize and deal with the mentally ill. They “should understand that psychotic behavior cannot be overcome by willpower. Psychotic behavior can only be overcome by medical intervention, including talk therapy and medication. People struggling with mental illness need patience, compassion, understanding and treatment.”

“Psychotic behavior cannot be overcome by willpower. Psychotic behavior can only be overcome by medical intervention.”

During her second hospitalization, which took place in Cincinnati, she came to terms with her mental illness and accepted the reality that, in order to improve, she needed to follow a medication regimen. Though her insight into her condition was a milestone, the struggle continued, as she went through several medications (and endured their side effects), hoping to find one that worked.

For Yeiser, the magic pill was clozapine (also known by its brand name Clozaril). This was the medication that facilitated her recovery. Soon she was socializing and pursuing her former hobbies as well as plans for her future.

Clozapine is often regarded as a last-resort medication because of its potential serious side effects, including significant weight gain, heart and respiratory problems, risk of seizure, and reduction of white blood cells. Despite such concerns, the strong possibility for life-changing benefit makes Yeiser “want to see more patients try clozapine, so that there will be more stories of full recovery like mine.”

With her schizophrenia in remission, she enrolled at the University of Cincinnati, where she finished her undergraduate studies, eventually obtaining her degree in molecular biology in 2011. She since has been involved with medical research, in which she was investigating the possible relationship between antimalarial drugs and rare mental health side effects.

In February 2012, she began composing her memoir, Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery, which saw publication in July 2014. Also of note is that her mother, Karen, wrote her own memoir about the parental perspective of her daughter’s psychosis.

Mind Estranged has garnered considerable readership, and Yeiser has been contacted by many people and their loved ones “asking for advice, and sharing their own stories. Many of these stories have similarities to my own journey. Some of these people who have contacted me have become great friends.”

Among her shorter written works is her article, “My Triumph Over Psychosis: A Journey From Schizophrenia and Homelessness to College Graduate,” which appeared in the Schizophrenia Bulletin. One can access links to other articles, along with her blogs, at her website.

Asymptomatic for almost a decade, she has been very active as a speaker and advocate for the mentally ill. She often delivers talks at the University of Cincinnati, where her audience has consisted of law students, medical students, resident psychiatrists, and student organizations. She also has delivered motivational speeches at a variety of hospitals and churches. “My passion is to promote public education and to reduce the stigma of schizophrenia,” she says.

These days, Yeiser is a successful author and mental health advocate.

In spreading this message, much work remains. She laments how “society does not properly treat persons with schizophrenia who are in desperate need of compassion or care. People suffering from schizophrenia are very often incarcerated…They are also unlikely to receive medical care for other serious illnesses they may have, such as diabetes and high blood pressure.”

Yeiser sees the stigma of her condition perpetuated by a news media that “often presents sensational stories about people with schizophrenia, which portray us as dangerous, eccentric, weak, and difficult to relate to.” She points out how “many people with schizophrenia struggle to find employment, even after their symptoms improve and their behavior returns to normal.”

Striving to advocate and educate, she – along with Dr. Henry Nasrallah, who chairs the Department of Psychiatry & Behavioral Neuroscience at Saint Louis University – established the CURESZ Foundation in July 2016. The CURESZ acronym stands for: Comprehensive Understanding via Research and Education into SchiZophrenia. Through this organization and her speaking engagements, Yeiser’s goal is “to be the voice of those with schizophrenia who have not yet recovered.”

Mental Health

The Scholar With Schizophrenia

Elyn R. Saks was just a teenager when she started believing her thoughts could kill other people. But with treatment, her schizophrenia didn't stop her from living a happy, intellectually-fulfilling life.

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Elyn R. Saks (photo courtesy of Gould School of Law)

One morning, when Elyn R. Saks was in high school, she suddenly decided to leave class and head home. During the three-mile walk, the world around her started “becoming very intense,” and she began to think that the houses were sending her messages: Look closely. You are special. You are especially bad. Look closely and ye shall find. There are many things you must see. See. See.

This was Saks’ first psychotic episode. Her mind quieted for a while and, after high school, she became class valedictorian at Vanderbilt University and received the Marshall scholarship to study philosophy at Oxford. While there, the 21-year-old Saks experienced a complete schizophrenic break. This time around her dark fantasies took a frightening, suicidal cast. She told a doctor that maybe she should douse herself with gasoline and set herself on fire. “That might be best, because I am bad and deserve to suffer.” This episode led to one of two lengthy hospital stays in England. When she completed her master’s degree 1981, she had lost two years to her illness.

At one point, Saks was told that she “would live in a board and care facility and work at a menial job at best.” Today, she is a recipient of the MacArthur “genius” grant, a law professor at the University of Southern California, and a mental health policy expert. Partly inspired by her own experience of being forcibly hospitalized, which she vividly describes in her 2007 memoir, The Center Cannot Hold: My Journey Through Madness, she often advocates for greater patient rights and autonomy.  

In Saks’ 2012 TED Talk, she closes by saying that if there were a magic pill that would instantly cure her, she would take it in an instant, but she doesn’t regret the life she could have had nor does she want pity. Says Saks, “… the humanity we all share is more important than the mental illness we may not. What those of us who suffer with mental illness want is what everybody wants: in the words of Sigmund Freud, ‘to work and to love.’”

The humanity we all share is more important than the mental illness we may not.

Here Saks discusses the realities of dealing with schizophrenia, the importance of her husband and friends, and the and the biggest misconceptions about mental illness.

Would you mind describing one of your more powerful psychotic episodes?

It was November, first semester of my first year at Yale law school, and I started slipping. I walked outside on the roof of the Yale law school library, which was flat and safe. Some friends came and I started gesticulating, dancing around, and singing, “Come to the Florida sunshine bush, where there are lemons, where they make demons.” My friends asked if I was on drugs. I said, “No. No drugs at all.”

I had delusional beliefs that I could kill people with my thoughts. And my speech was incoherent. For example, I said “Are you having the same experience I am of words jumping around in our legal cases? Our cases have been infiltrated. We’ve gotta case the joint. I don’t believe in joints, but they do hold your body together.” These are called “loose associations,” where words are loosely associated, but don’t make sense together.

Eventually, we all went home. The next morning, I went to see my professor to ask for an extension and I started behaving the same way. He took me to the Emergency Room, where I was restrained for the first time. It was extremely toxic and traumatic. From there, I ended up hospitalized for five months. That happened around ’82, ’83. I haven’t been in a hospital since then. That is sort of my proudest accomplishment, which is a weird thing to say. You wouldn’t say you were proud of not relapsing from cancer, but I think there are small choices people can make that will lead to better or worse outcomes. Thank God my analysts have all been willing to sit with a certain amount of anxiety about my well being for the sake of respecting my wish not to be hospitalized.

What symptoms of schizophrenia do you still experience?

My husband likes to say that psychosis is not an on-and-off switch but a dimmer. At one end, I’ll have a crazy idea, like I’ll think I’ve killed people with my thoughts, and I’ll recognize it immediately: “Oh, Elyn, that’s just your illness acting up. Pay it no mind.” And then further along the spectrum, say we have house guests. I love my friends but I find it hard to be around people a lot. I may have three or four days when I’m in and out of psychosis. At the far end, I’m crouching in a corner shaking, scared out of my wits. That hasn’t happened in a good decade. I still have some transient symptoms, but nothing really severe or really long lasting.

It’s sort of silly to quantify but, when I was in England, I would say like 70-80 percent of my waking thoughts were psychotic. At Yale, in New Haven, I would say 30 percent. Now we’re talking about three to four percent.

Psychosis is not an on-and-off switch but a dimmer.

How do your husband and friends help monitor your illness?

My husband and my closest friend Steve serve as another set of eyes if I start slipping. I’m very happy to have them involved. Occasionally, one of them will want to call my doctor and I say, “If you want to, that’s fine.” One time Steve called my doctor and said, “Elyn seems really unwell. She’s talking about going to China in advance of your trip to clear out of all the bad people.” To which my doctor responded, “How very considerate of her.”

Do you think having these strong social connections is a big part of dealing with schizophrenia? I imagine it’s very difficult for some people with the illness to maintain those connections.

I’ve been very fortunate. Some of the so-called “negative” symptoms of schizophrenia [meaning behaviors that are absent or diminished compared to people without schizophrenia – ed.] are a lack of relationships, a hard time working, and withdrawal. I’ve been spared those negative symptoms. Having people in my life makes my life much better and gives it meaning and depth. I sometimes have students with the illness. We’ll have lunch and they’ll ask me, “How do you manage to keep your friends? I haven’t been able to.” I don’t really know what to say except that if you are a good friend to people, they’ll be good friends back.

What are some of the biggest misconceptions people have about schizophrenia and those who suffer from it?

First is that we’re violent. In fact, people with mental illness—that’s not just schizophrenia but everything—commit only around two to three percent of violent crime. We’re much likelier to be victimized than be victimizers. I think we need to educate the public that mental illness doesn’t mean dangerousness. The more flamboyant crimes usually do involve mental illness, but those are so rare.

The second thing is that people cannot live independently, cannot work, cannot have relationships, cannot get married, cannot have kids. It’s just not true. A lot of us can do those things.

I think we need to educate the public that mental illness doesn’t mean dangerousness.

I’ve read that, when it comes to treatment, you’re against force being used, for example: to restrain someone during an episode, or to force them to make a decision they can’t choose to make. How should we help someone is who is having a psychotic episode get treatment?

I’m not totally anti-force. I think there are cases were force is needed. For example, if someone’s imminently dangerous, or if they cannot understand their situation and make a competent choice. If my loved one said, “This anti-psychotic medication has really helped me in the past, but I cannot take it now because I’ve been told it will cause a nuclear explosion,” I would want to step in and say, “Give her the meds.”

I’d also like to say that I think force is not good. It causes humiliation and shame. And it’s a very unstable solution because once you stop administering the force the person has no incentive to go back. We should use it as little as possible. What I propose is studying ways to get people to want treatment, so we don’t have to use force. I think that should be a big research focus of psychiatrists and psychologists.

What are some ways to help people want to get treatment?

Well, I want to do a study that has three arms. One will be someone who’s gotten on medication right away and stayed on it. The other extreme would be someone who has resisted medication for 10 years, tried to get off every couple of months, or stayed off for a year or two. In the middle are people who kind of tip. These people start off noncompliant and not wanting medication, and then something happens that makes them want it. I think by studying those three groups, we can learn some of the things that make people tip. Then we can help other people tip sooner and more completely.

Why do people refuse anti-psychotic medication?

I think people refuse meds for all sorts of reasons. One, they don’t like the side effects. But to me, if the choice is between gaining some weight and being psychotic, I’m going to take gaining weight. I gained about 20 pounds. If I gained 100 pounds, I might feel differently. Second, they feel better and don’t think they need it anymore, similar to the way people stop antibiotics before they’re supposed to. Third, they’re in denial that they have an illness.

To me, the most powerful reason [to refuse anti-psychotic medication] is the narcissistic injury of having a mental illness and needing medication. That’s the thing that most affected me. It’s just very painful. I wanted to get off medication to prove that I really wasn’t mentally ill, that it was all some big mistake. Ironically, once I got on the medication consistently and accepted the illness, it became much less front and center. I’ve found that the more I embrace it, the less it defines me.

I’ve found that the more I embrace [my condition], the less it defines me.

There are ways you can encourage people to take meds. Try to get a sense of their needs, wants, and values, and how meds fit into that. For example, I think you can tell people, “Whether or not you’re ill, this med will help you with the restlessness you’re complaining of or the sleeplessness.” There’s a really good book by Xavier Amador called I’m Not Sick, I Don’t Need Help! that walks families through trying to get their loved ones to agree to meds.

What helped you decide to start taking medication?

I always took it, but I was trying to get off of it for about 10 years. Actually, my doctor kind of coerced me. He said, “Look getting off medication keeps you going in and out of episodes. You want to get on with your life. If you want to keep seeing me, you have to take your meds.” Once I got on the meds consistently, my life got much better. I wouldn’t think about going off of them now, because I just have a much better life than when I was going on and off.

What meds are you currently on?

I’m on Prozac for anxiety and Clozapine for schizophrenia.

How has psychoanalysis helped you cope with schizophrenia?

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Photo courtesy of the USC Gould School of Law

First, stress is bad for any illness, particularly mental illness. Analysis can help you identify and either avoid or manage your stressors. Second, it fortifies an observing ego, so you can stand back and view what’s going on in your mind and assess it and understand it. Third, it’s a safe place to bring your crazy, violent, and chaotic thoughts, sort of like a steam valve. If you say [these thoughts] in therapy, you don’t have to say them in your outside world. Also, therapy can involve insights. I remember once I was saying violent things and my doctor said, “Elyn I think you’re saying violent things because you’re scared. The violence is your defense against the fear.” That helped make it go away.

Then finally, having a kind, smart, and well-meaning person who accepts you not only for the good but also the bad and ugly is very empowering and helpful. Another way to think about it is that people with schizophrenia have relationship and work issues just like everybody else, and therapy can help with those issues. In the field today, we think not so much in terms of reduction or remission of symptoms, but quality of life. It’s for the person herself to say what that is for her. Therapy can help achieve that.

Do you think that with the right help many other people with schizophrenia could lead similarly high-functioning lives?

I’m doing a study on high-functioning people with schizophrenia with some folks at UCLA and USC. People sometimes say I’m unique, but in fact we fairly quickly got 20 subjects—two MDs, two JDs, Ph.D. candidates, full-time teachers, a CEO of a not-for-profit organization. There are people out there like me. It’s just so stigmatized that they don’t come forward.

There are people out there like me. It’s just so stigmatized that they don’t come forward.

I asked psychiatrist and schizophrenia expert Stephen Marder what percentage of people with schizophrenia he thought were high functioning in our sense, which would be professional, managerial, technical, etc. He said, “I don’t know, Elyn. But the real question is how many could be if we provided proper resources.” I thought that was the right answer. I think it’s a mistake to tell people, to lower their expectations. I think many people can live up to their premorbid potential with enough help and enough support. And it does them a really big disservice to basically tell them to stop trying.