Sunset, Wrightsville Beach, North Carolina

Mental Illness and Being Human

On March 8, 2013, I gave a talk for a Faith Connections conference in Chapel Hill, North Carolina. When I was asked to give the talk, I welcomed the opportunity, because over the past several years I had some remarkable experiences in my chosen field of mental health, and giving the talk would give me chance to work through some changes in how I thought about my work.

One of the organizers of Faith Connections asked me if I would talk about any personal connections I had to someone with mental illness. So I spoke briefly spoke about my own experience with depression, recognizing that is was nothing like the kind of things that my clients experienced. I am not disabled by illness; I have never been suicidal or lost relationships; and I’ve never experienced overt discrimination based on my health. I am human, and depression and anxiety are common in my family. As a teenager, I would indulge my melancholy moods by retreating to my room and singing along with Joni Mitchell about heartache. Over the past several years, I’ve tried a few antidepressants, and found them intolerable. They took away my ability to think, and I value that, so I manage my moods with introspection, meditation, music, exercise, and connection to people I love. That’s what works for me.

For those of us who work in the field of mental health, especially those of us who work in the public sector, the years of mental health reform in North Carolina have been rough. Over the past ten years, what I’ve seen has put me more in touch with the role of stress in mental illness, and the need for all of us to be mindful of our own mental health. And it also made me question the line we draw between us and them — I’ve come to see that as an artificial line, and one that we should erase. But that will mean all of us need to face our own vulnerabilities, and that can be a scary thing.

My first experience getting to know people with mental illness was in 1984. I’d just graduated from Vassar College with a degree in English, having had a rich liberal arts education with plenty of practical courses in religion, philosophy and literature. I felt pretty lucky in life, and wanted to do something to give back. As a seminary student, my father had been a Winant Volunteer in the 1950s and worked with troubled youth in London. The Winant program was created after WWII in England when there was a shortage of social service workers. So when my parents suggested that I apply, I saw it as a good opportunity to give something back, and to go on an adventure.

I was placed in a psychiatric hospital in the countryside north of London — Shenley Hospital. For six weeks, I lived on the grounds of the hospital in the nurses’ dorm. I worked on a psychiatric rehabilitation ward with five “residents” (the term they used for their patients) who were planning a move to the community.

Now, when I arrived at Shenley, I knew nothing about mental illness. I had pointedly stayed away from psychology classes in college, with the rather romantic idea that you couldn’t use science to explain human behavior. But I was open-minded, and ready to learn new things.

I can picture the residents I worked with very clearly — Walter, a large, quiet man with a beard and glasses. Terry, who carried a tattered postcard from his brother in Australia in his back pocket. Rose, the mother of two young children who made no sense when she talked, and whose tongue made strange rolling movements. Colin, who had a cousin who was a famous novelist. He loved books and had many in his room, neatly lining bookshelves, but never opened to read. And Henry. I couldn’t figure out Henry. He seemed absolutely normal to me. He was an older man, and when I met him, he said: “We’re all human here.” Through all these years, his words have stayed with me.

The five residents of my ward were planning a move, as a group, into apartments down the road in the village. I didn’t realize it at the time, but Shenley Hospital and its residents were going through deinstitutionalization.

Shenley Hospital was beautiful. The wards were comfortable and the grounds were lovely. There were hundreds of patients living there in 1984. The doors were not locked on my ward, and the boundary between the hospital and the village was permeable. My days were spent helping the residents learn the practical skills they’d need to live on their own. We had cooking lessons, and went shopping. We had community integration outings to local pubs. The residents worked together as a group, and learned each other’s strengths so they could support each other as roommates. Their excitement at the coming change in their lives was palpable.

I worked most closely with two occupational therapists, Betty, who was kind, energetic and practical, and Diane, an Australian who was in the midst of world travels — stopping at Shenley for awhile to earn some money. Our ward was known for Betty’s cakes and curry puffs. We’d make cakes and savory pastries for other wards to buy, and use the funds to have parties on our ward, with residents and staff together. We had a break for tea every afternoon, and I spent tea-time talking politics with the nurse, John, who was in charge of our ward.

I didn’t learn much at all about the residents’ medical treatment. I think they all took medications. I did some research work for one of the psychiatrists — in the days before computers, I collected data from charts and wrote in a big ledger — compiling admission dates and diagnoses. I remember wondering why so many of the residents were diagnosed with schizophrenia. And, the striking thing to me, was learning that many of the residents, who were in their 40s and 50s, had spent most of their adult lives in Shenley.

In the middle of my stay at Shenley, Henry was hit by a car and killed on a walk to his new apartment. We were all incredibly saddened. After his death, I had my first direct experience of the stigma of mental illness. His family did not want his friends from Shenley to attend his funeral. We went anyway, recognizing how important it was to the people who had essentially been his family for years. As I tearfully spoke with his estranged wife, expressing my own grief, she seemed surprised to see that we cared for her husband.

When I returned home from England, I got right back into what I planned for life after college — looking for a job in either book publishing, or the music publishing industry. I ended up working for a company that published guides to government documents — and learned a lot about congressional hearings and executive orders for a couple of years, before getting a more glamorous publishing job as a researcher on a Time-Life book series on gardening. It was a cool job, at a cool start-up. We had talks about stock options, and lots of future growth. But then Time-Life cancelled the contract, and I was the second person let go.

Losing that job made me take the time to figure out what I really wanted to do — what was important about work. And I found myself drawn to social work, primarily because of the value-base: respect for the worth and dignity of the individual, and promotion of social justice. I wanted to do something meaningful, and social work seemed like a good fit for me.

My husband and I moved to NC in 1991 for me to go to the UNC School of Social Work. I didn’t think that I would go into direct practice — I was too emotional, and felt things deeply, and thought I’d be better at administrative work.

One of the great things about social work education is the field education — classroom learning is combined with real world experience. In my first year, I worked at OPC Mental Health Center — and got to work at Club Nova.

When I was first introduced to Club Nova, it felt very familiar. The members reminded me of the residents I knew at Shenley. But now I was a grad student, and I was learning about human behavior in the social environment, and mental disorders, and methods of practice. I also found a faculty member, Ed Taylor, who was doing research on schizophrenia. He was in the midst of a twin study with Fuller Torrey. I started working as Ed’s research assistant. So my learning was both experiential and academic. And schizophrenia as an academic topic was fascinating to me. I wrote a masters essay on cognitive remediation of schizophrenia, and delved into the theories of Soviet psychologist, Lev Vygotsky. Vygotsky’s theories are more often cited in education — they have to do with learning and the importance of social connections, that when we work together, our minds can go farther. He also addresses the importance of social, cultural, and historical factors in human development, and this perspective made sense to me, given my rich education in the liberal arts. And it fit with social work’s emphasis on the importance of the social environment, and all the complexity that goes with it.

From graduate school on, I’ve focused on working with people with schizophrenia and related disorders. I found that I was really good at connecting with people who experienced psychosis.

What’s it like to be psychotic? The actor Alan Alda’s mother had schizophrenia, and he wrote about how later in life he started learning about her mental illness. Here is how he described it:

“I got a much greater understanding of what she went through — especially the idea that her hallucinations took place in the same part of her brain that all of our nightmares take place. I have experienced what she went through, except I could wake up from it, and she never could.”

He makes the connection that all of us experience something that is not unlike psychosis.

In 1993, my first job out of school was at the Durham Mental Health Center — it was a temporary position, filling in for someone on medical leave. My first day on the job, I was handed a caseload list with 100 names on it. I sat and waited for someone to tell me what to do. The second day, I realized that no one was going to tell me what to do, and I better start figuring it out myself. All the people on my list had severe mental illness, and many lived in family care homes and rest homes. I would go to see them in the community. I was hoping for a permanent job at the mental health center, but an opportunity came up at John Umstead for a permanent job with benefits, and I took that one.

John Umstead Hospital was not like Shenley. The buildings were old Army barracks, the doors were locked, and the feel was institutional, not pastoral. I was placed on the schizophrenia team in the adult admissions unit. In my orientation, I was taught to look in the window before entering a locked ward to see if there was a disturbance — if there was, it was better to come back later.

What was clear is that people got good treatment at John Umstead, even if conditions were harsh and choice and freedom limited. We had multidisciplinary teams, with a psychiatrist, social worker, occupational therapist, recreation therapist and psychologist. I worked directly with one attending psychiatrist. I told him when we met that I wanted to learn from him — and he taught me a lot. I accompanied him on every new patient assessment.

I started working with families while at John Umstead Hospital. Part of my job was to get collateral information on newly admitted patients. We always asked patients to sign consent for family contact — most did — so that I could talk to family members, or to whoever the patient was connected to. Most of the time, these families were in crisis. I would let them tell their stories so that I could get the information I needed for the psychosocial assessments I wrote up. And it was clear that in the storytelling, they experienced some relief. I provided information, education, and support. I told them what I knew about mental illness, and I offered up hope.

I like to think that my approach to working with people with mental illness comes from my unlearned, naive connection to the residents at Shenley combined with my academic and clinical learning. And I’ve also valued my study of literature, and recognize the importance of storytelling and understanding the themes in people’s stories as a way to help them. I think we can all recognize how meaningful it can be to feel understood, like someone gets us and where we’re coming from.

There were a lot of good things about my job at John Umstead, and my social work colleagues were fabulous. The chief social worker at the time, Carol Council, would put the newest social worker right by her office and keep a careful eye out, and always be available for supervision. She also made us go to lunch. There weren’t many options in Butner. But most days, we’d pile into someone’s car and head off campus for a good break — filled with laughter and good conversation. Looking back, I see very clearly the value of those lunches in sustaining the emotional health of the workers who touched human suffering every day.

Carol was a proponent of family work, and I got my first experience with family psychoeducation at John Umstead. We offered a monthly psychoeducational workshop. We invited all the family members of current patients to come in and learn about mental illness. I learned that family members were more likely to come if they had connected with me, or with one of my colleagues. We helped families connect with each other, provided information, and gave them the opportunity to ask questions of a psychiatrist. And, thanks to Joe McEvoy, a Duke psychiatrist who provided the funding, we served them lunch. And we had the best conversations over lunch — it’s amazing how sharing a meal can bring down barriers and help us connect.

Working at a state hospital was not easy — there was a flow to get used to. Having more than 15 people on our team caseload was too much, so when the numbers crept up, someone had to be discharged to make room for the new folks coming in. Dr. McGee and I had a running argument: “So and so needs to go — he’s stable.” “But he doesn’t have a place to go, he can’t leave.” We worked through it, but the pressure was always there.

After two years at John Umstead, a job opportunity came up and I jumped at it — the UNC Schizophrenia Treatment and Evaluation Program was looking for a social worker to coordinate their outpatient program. I had learned about STEP a couple of years earlier — they offered specialized treatment for people with psychotic disorders in both inpatient and outpatient programs. And the clinic was based in a training program, so offered the opportunity to teach and train new mental health professionals.

I asked my mentor Ed Taylor about the job — he encouraged me to take it, and also encouraged me to take on a social work intern.

I worked in the UNC Department of Psychiatry for 17 years — serving as the Director of Outpatient Services in the STEP Clinic from 1995–2008, and as a founder and co-director of the UNC Center for Excellence in Community Mental Health from 2009–2011.

Starting in the early 2000s, I shifted my attention from clinical care to program development — with the hopes of taking what my colleagues had been learning through research studies and putting it into practice.

One of the exciting things we did was to create a specialized early psychosis program, OASIS. In the mid 1990s, my colleague Diana Perkins, along with Jeff Lieberman and others at UNC, was doing clinical research studies with young people who were experiencing first episodes of psychosis. One of the things we know about schizophrenia is that it most often emerges in late adolescence and early adulthood. What the research was showing was that if you treated the psychosis with medications quickly, that most people had a very good recovery. But, most people had long durations of untreated psychosis, and once in treatment, would stop taking medications when they felt better and almost inevitably have a relapse of psychosis. This second episode, and the third and on, were harder to treat, and people didn’t recover as well.

So the thinking was, what if you could prevent the recurrence of psychosis? Could you change the trajectory of the disease? Could we reduce the disability caused by schizophrenia?

International programs in Australia, Canada and the UK were developing specialized early psychosis teams and putting these ideas to the test.

In 2004, I traveled to Birmingham, England to visit the Early Intervention Service to learn about how they did things. Diana Perkins, David Penn and I worked on plans for developing an early psychosis program, and sought start up funds from The Duke Endowment and Kate B. Reynolds Charitable Trust. OASIS opened its doors in 2005, and I’m happy to say that the program is thriving. What we’ve been able to do at OASIS is to put what we learned from research studies and clinical experience into practice.

Some of the basic principles of work in the area of early intervention are to increase awareness of psychosis, to convey the message that psychosis is treatable, to respond quickly to referrals, and to make the clinical setting youth friendly. OASIS provides team-oriented care, with careful medication management, psychotherapy and family work being the core components. They have a very strong family program, and convey the expectation that the whole family will be involved in treatment.

OASIS is a clear example of translation of psychiatric research into clinical care, something that typically happens very slowly, if at all. In order to develop an evidence-based practice, someone must first develop an intervention based on a well-grounded theory, then conduct well-designed research studies to prove its effectiveness. Some interventions lend themselves to this kind of approach. For instance, cognitive behavioral therapy is structured, and there are manuals that will describe what to do, session by session. Other types of psychotherapy are not as prescribed in their application — they may be more individualized. And they may not have a strong evidence base. But that may mean that no one has ever done a good study on the intervention, not that the intervention doesn’t work.

Oftentimes, we read about what works for an individual, and it doesn’t fit what we learn about evidence-based practice. That’s where our human complexity comes in — what works for one person may not work for another. This is a particularly thorny issue in mental health, as we struggle to balance choice and autonomy with evidence.

Recently, I read The Center Cannot Hold by Elyn Saks, a professor of law, psychology and psychiatry and the behavioral sciences at the University of Southern California. She is extraordinarily accomplished, and she has schizophrenia. In her book, she describes the onset of her psychosis while she is a graduate student at Oxford, studying philosophy in the ancient Greek. When she becomes ill, she is hospitalized voluntarily. She’s reluctant to take medication. After four months, she is discharged with the recommendation that she see a psychoanalyst. She describes her lengthy psychoanalysis, and her work, as being key to her recovery and her success.

In contrast to Professor Saks’ powerful story of recovery, I’ve also read Nightmare: A Schizophrenia Narrative, a memoir written by Wendell Williamson. It is very difficult to read. Wendell Williamson was a former UNC law student who developed schizophrenia. In 1995, he walked down Henderson St. in Chapel Hill with a rifle, killing two people and injuring a police officer. In his trial, he was found not guilty by reason of insanity. He currently resides in a forensic unit of a psychiatric hospital. In the hospital setting, his psychosis cleared, and his rational mind returned.

His story is chilling, as he recounts the onset of his psychosis in 1992, and describes in full detail what was going through his mind. He can hear others peoples’ thoughts, and believes he is telepathic. At first, he uses his telepathy as a kind of amusing game. He is hospitalized briefly a couple of times, and takes medications for a brief time as an outpatient. But when his psychiatrist retired, he didn’t find a new one and stopped taking medications. At the time of the shootings, he was fully immersed in his delusions and believed that he was saving the world.

After his trial, Williamson sued his retired psychiatrist for negligence on the grounds that he was not told the seriousness of his illness, and no specific follow-up was made upon his psychiatrist’s retirement. He won the suit, which was overturned on appeal. This lawsuit was quite controversial as it brought up issues about who was responsible for the actions of a person with mental illness. I remember talking with Club Nova members who thought mental illness shouldn’t absolve someone of responsibility for their actions.

When I contrast these two stories there are a couple of things that jump out at me. Both writers describe their psychosis not as voices, but as thoughts. The thoughts are not their own — they come from outside themselves. And both have dark thoughts. But for Elyn Saks, it seems that her engagement in psychotherapy helped her contain her psychosis. She had someone outside of herself putting things in perspective, and she had a safe place to describe her experiences without fear that she would be judged. Her treatment providers in England also advised her to return to her studies. She describes how when she focused on her work, she could push the psychotic thoughts aside. Elyn Saks describes important friendships throughout; Wendell Williamson describes a deepening alienation from the people around him.

As I read Nightmare, I started marking places where perhaps an intervention could have taken place that would have changed the trajectory of that fateful day. As hard as it is to read the account, it’s an important story, and can help us understand why these unthinkable things can happen. At one point, there is a lull in his psychosis — when he meets a woman and begins a romantic relationship that goes well for awhile. And that got me thinking of the importance of our social connections. If we are socially connected, we are more grounded, and not so focused on what goes on inside our own heads. As an introvert, I recognize that in myself. If I am depressed, I am inwardly focused. And I have no doubt that social connections help us on a biological level. There have been research studies at UNC using oxytocin to treat paranoia and autism — oxytocin is the hormone of attachment. Our bodies release it when we nurse our babies, and when we gaze into the eyes of our dogs. (That might explain why I have three dogs!)

I do want to make clear that these kind of violent acts are very rare. Unfortunately, when they occur, the stigma of mental illness only gets enforced, keeping the vicious cycle going.

In my clinical work with people with psychotic disorders, engagement has always been key. As clinicians, we depend on people’s willingness to tell us what’s going on inside their heads — think about that for a minute — how many people do you tell your most private thoughts to? Without that trust and that dialogue, it’s hard to know how to help someone. So I make people feel comfortable, and I work hard to be helpful and reliable. Sometimes people don’t want to tell their stories at first — and I don’t push.

I support the use of medications to treat psychosis. When I worked at Shenley, I was skeptical of medications. But in my personal clinical experience, I have clearly seen them work. But I don’t believe that medications are sufficient for the treatment of mental illness — they can help with the biological aspects, and that might influence the psychological, but it generally doesn’t help the social and spiritual aspects of mental illness. Psychotherapy, rehabilitation, social connection and finding a spiritual path can help with those areas.

Reading Wendell Williamson’s story reminds me of the first time I personally knew someone who experienced psychosis. At the end of my freshman year in college, my friend Todd had gone from being a cute and popular young man to being odd and socially awkward. In the spring, he came to my friend JC distraught — he told JC that the birds were telling him that he was evil. JC, a really good guy, brushed him off. Todd then went to the roof of my dorm and jumped off. Another friend of mine, a student EMT and future physician, was one of the first to reach him on the ground. Todd died from his injuries. We were all devastated and confused. Why did this happen? We couldn’t make sense of it. It was all the more troubling to me because at the beginning of the year, at freshman orientation that had a beer truck at every turn, Todd and I had ended up kissing on the same roof that he jumped from. It was only years later that I figured out that Todd was psychotic, and that the changes in his behavior over the course of freshman year were probably the prodromal phase of a severe mental illness.

What if we had understood psychosis? And knew that he was in trouble, stayed with him, and helped him be safe? We were good kids, and we cared deeply about each other. But we had no clue.

I can’t talk about first person accounts of schizophrenia without mentioning our book project. In 2009, we held a book release party for Our Voices: First Person Accounts of Schizophrenia. The story of Our Voices started several years earlier. My colleague Jenny ran a women’s group, and one of the members, had an idea for a book. Jenny encouraged her to develop the idea, and soon there was a book committee: three women and two men. They came up with a plan for a book focused on the lived experience of schizophrenia and schizoaffective disorder. They developed a questionnaire — 65 questions about all aspects of mental illness. Then they recruited 15 people to complete the questionnaires. We compiled the responses, collected poems, essays and facts about mental illness and made a book.

Now thankfully, somewhere along the line, STEP had received an anonymous gift from a family member for a special project. I was able to use these funds to pay for self-publishing, and the book became real. The book committee had decided to preserve the privacy of the people who completed the questionnaires by having them select a fake name. As our work progressed, the book committee members decided that they would use their real names as editors of the book. This was a big deal, because it essentially meant that they were outing themselves to the world — the book would be available for purchase on the internet, and their names would be listed on the cover as editors. It was taking a personal risk, and taking a stance to fight stigma.

Once we had the book in hand, we had a book release party. Lee Smith came, and said a few words. She brought members of the literary community. The members of the book committee glowed. I think this was the highlight of my work at STEP — the book project had been transformative for the book committee. They were now published authors, signing books, and people were impressed and moved by what they had to say.

My colleague, Laurie Selz-Campbell, used Our Voices as a textbook in her class on Mental Health Recovery and Psychiatric Rehabilitation in the UNC School of Social Work. And a couple of years ago, I received an email from a student of illustration in the UK — Luke Spooner. He was working on an illustrated book on hallucinations and was seeking permission to use quotes from our book. I gave him that permission, and was amazed at the international collaboration made possible by the internet.

In the summer of 2010, we had a meeting with the book committee to talk about next steps — what else could we do with the book? And several of the book committee members agreed to become vocal advocates, and were willing to speak openly about their experiences to advocate for justice and social change in how our society treats people with severe mental illness. But just two days after that meeting, one member of the book committee and our greatest champion for social justice, died. That took our breath away, and we paused.

In the aftermath of his death, I realized that my relationship to my clients had changed. These were people in my community who I care about. My husband and I were buying a car when I got the call from Jenny that he had died. As we waited for our loan to be processed, I was taking calls from his sisters. The first thing Jenny did when she heard the news was to go directly to the house of other book committee members to tell them in person. We both made calls and connected to his friends, the Club Nova community and his family. We made sure to take care of the people who cared about his, and that was us, too. We all took care of each other.

People diagnosed with schizophrenia suffer two blows — the illness itself and our social construct of it. That it is something to be ashamed of, feared, and that it means the loss of hope. We don’t have a cure for the illness, but we do have effective treatment. Elyn Saks is proof that people with schizophrenia can be successful, both in work and relationships. And I’ve seen proof of recovery over and over again in my clinical work. We can medicate the brain; help people move toward acceptance; teach skills; and offer support. We can help people along their path to recovery.

But how do we change the social construct of schizophrenia? That is up to all of us — treatment providers and service systems can’t do that. We need to connect, and understand, and not be afraid. We need to see people with mental illness in their full humanity.

And what does that mean in concrete terms? What do we need to do? First, we need to connect and include. We need to support people whose minds work differently in schools and in work settings.

In our schools, we can have a tremendous impact by taking a public health approach to mental health — young people need to learn about mental health and mental wellbeing in the same way that they learn about healthy eating, physical activity and sexual health. There is a lot of hope in the research on prevention of severe mental illness, and its got to start young. One of the key things is learning about the effects of stress and our physical response to it. This area may be key to many different forms of mental illness. Oftentimes I will find resources on mental health that don’t address psychosis. We can talk about depression and anxiety and eating disorders and ADHD. But let’s just not mention psychosis and schizophrenia. Those words are too scary.

And schizophrenia has become a heavily loaded word. In Japan, they’ve actually changed the name and call it something else. Lots of people fight against diagnostic labels. I fall more on the side of let’s say it out loud. Let’s call it what it is. But let’s change what we believe about it. We’ve done that with HIV and AIDS. Cancer can be a terrible illness but it doesn’t have to be. Diabetes can cause blindness and loss of limbs — but it doesn’t have to. Schizophrenia can be a terrible illness, but it doesn’t have to be.

But it’s going to take the will to really give people what they need to recover — not just medications, psychotherapy, and rehabilitative services. But also love and full inclusion in our human family.

We may need supported employment services, but we also need employers who will take a chance on someone who might act or think differently. We need work settings that are flexible — that will accommodate people who have good days and bad days.

Our hope for social change lies with our young people — even President Obama noted that his daughters swayed him on the issue of gay marriage. In 2009, at the book release party for Our Voices, my 9 year-old son met some of the people I worked with. He took a shine to one of the members of the book committee, and frequently asked about her. He would ask me questions about my work, and about schizophrenia. After the book release party, he told me “people with schizophrenia are unique and cool.” This is where change happens — a different social construct — a young, curious mind making his own opinion that is different from our larger society’s view.

We need to be bold and talk about our own mental health — depression, anxiety, and psychosis make us human, but we can only talk about them in hushed tones. Who among us has been afraid to ask for help?

I left my clinical practice in 2012 because the way I practiced didn’t fit with the new business model in our mental health system. But I did not leave my social work practice — my focus has shifted.

We need to listen to these stories, recognize ourselves in them, and most of all, not be afraid to tell them. Thank you for reading my story.