T he Mental Health Forum

In the years following my schizophrenia diagnosis, I kept having the same recurrent dream of unfinished business. Sometimes, it took the form of failing to complete class work for my final semester at Duke University. Other times, I was unable to complete my imaginary job as a preschool teacher or inadequate at meeting a deadline or person on time. The dreams haunted me, year after year, while my daily life languished and dissolved into a tasteless sludge of anhedonia, alogia and cognitive decline.

I was treated and recovered now, and I’ve been relatively able to manage my symptoms for years. But, while the delusions went away, the feeling of a very irrepressible sadness did not. I can tell fact from fiction now, at least on my good days, and I had been through the therapy programs and support groups.

I lived with my parents in a small town on the mountainside, about an hour’s drive from the city of Honolulu. It rained often, and life never really changed from one year to the next. I had been raised in Honolulu and knew it back in the days when tourists roamed the streets, and I could bike my way to art classes and the library on the weekends. Some days, I’d stop by to sit under the banyan tree at Thomas Square Park, or watch the orchid shows hosted outside the art museum.

Schizophrenia had made me risk averse, and any small turbulence brought high anxiety. The holiday season has come to be one of my favorite times of the year. I recall that December brought a mist and chill to my bedside window, and the neighbors often gifted us tins of cookies or bread. We would buy peppermint chocolate from the supermarket and sometimes drive out to the North Shore in the early morning to watch the monster waves at Sunset Beach.

Life had become more manageable, though I was plagued by this loneliness that I was different now from everyone else, that I had nothing left but family, and that I was sometimes just waiting to die. I often saw the shadows from the corners of my eyes following me through the sound of Christmas jinglers asking for donations and watching me in the ceilings of the bedroom. I felt like a student who never graduated, who never “made it” in life, and someone who was fighting to make it through from one day to the next.

That was when I spent a year’s time becoming very actively engaged in an online forum for people with schizophrenia. I met an Indian girl who liked to draw, an ex-medical student, a golfer from Australia, and many others. They were my first new friends, and this is their story.

Life with Anita

She sat in the corner stall of the downtown London office typing up addresses for people on a mailing list. Anita was a short and pretty Indian girl with a childlike innocence and shy demeanor. She didn’t hold too many negative thoughts, and often liked to go on the schizophrenia forum to share the new handbag that she bought online with money from her part time job, a new ochre sari that she was wearing to a family member’s wedding, or Indian style prints that she made with jelly roll coloring pens.

As far as the online mental health community went, this was as good as life can get for someone with schizophrenia. She didn’t ask for a designer education, an upper class boyfriend, or a job that paid her a higher wage. She felt, like many recovered patients with psychosis, that her abilities were limited and her dreams needed to be realistic and measured. She had a decent social life due to the many relatives she had in England, and she had siblings who cared for her well being.

Anita was a relatively long time member of the schizophrenia forum and was already there when I joined. I recall her sharing photos of a garden her family had taken her to that was one of her favorite places to visit when she felt down. She encouraged newcomers like me to take the high road – take medication religiously, find work or volunteer work, and see the beautiful world that the working class often ignored because of their busy schedules and demanding lives.

Deep down, many people at the forum thought almost obsessively about creating a better life for themselves, and Anita was no different. She liked walking down the tree lined avenues, downstairs from her family’s apartment, imagining how the other girls would admire her new handbag, or show her some kind of inclusion and approval. She liked doing some light reading here or there, and did some online dating.

In the depths of one’s heart, as someone with an untreatable and debilitating mental illness, there was often a longing desire for belonging. The illness often made you feel so out of place that you didn’t want other people to know, and you wanted to put on a face, especially in public, that everything was fine. The men wanted to be welcomed by their relatives during Thanksgiving dinners, to be able to have real conversations in spite of their poor speech and brain damage, and to work at some career that paid the bills. The women often wanted to buy new clothes and sit pretty at a cafe or garden watching the other couples and friends and staying on trend with the latest music and fashions. We all wanted to be a part of the community and glorified those who smiled and celebrated their lives.

Steve Contemplates His Past

Many of the people at the online schizophrenia forum were almost desperately obsessed with finding work or school, a significant other or a happy ending to the decrepit lives they were forced into. Most were welfare recipients who lived at home with family, had recovered from their psychosis, and were often online to encourage themselves to live better.

Steve was one of the few on the forum who held a full time job and did not receive welfare. When I first started visiting the forum, he held two jobs, one working as a pharmacy technician and the other as a Biology instructor at a local community college. He shared a picture of what life would be like if the mentally ill lived in the real world – a place where he dealt with stigma daily and had no family to turn to.

He lived in the Midwest and had been born to a poor and sometimes abusive family in the ghettoes of some unspecified city. In spite of his poor childhood, he was one of those who made it out and went to college and then got accepted into medical school. He found a wife who loved him who most men would die for, and for a short while, he felt that he had escaped from becoming like his siblings and dad. That was when the psychosis began. He didn’t say what his episode was about, but it might’ve involved clowns. He was rushed to the hospital by the university and eventually withdrew from medical school when his sanity returned. His counselor told him he had no chance to become a doctor again. Steve spent a few years trying to become a nurse. When he failed to complete that degree, his wife left.

That was the kind of life Steve dealt with as a schizophrenia patient. All the doors closed on him, and all his family died young until he was alone to wither on his own. He lost his job as a pharmacy technician after making passes at one of his colleagues, and struggled with work at a welding factory for several weeks before getting his finger maimed, forcing him to work as a cashier at a gas station convenience store that he had found through a friend.

The loss of his wife continued to bring him to tears, and he was always looking for a woman who could one day take her place. I imagine that she had been a pretty blonde woman, perhaps with glasses and her hair tied back into a pony tail, who smiled a sad and distant smile that left an impression on you when she was gone. He liked to cook goulash or spaghetti, and had a small apartment in the black side of town where he was routinely robbed or dealt with setbacks.

Thinking back on Steve, I sometimes wonder if he found someone he loved, and if he ever got rid of the clowns that plagued him in the night. I wanted to believe that the suffering of those with schizophrenia meant more to his community, and that the sins of his family were not passed down to him, year after year.

Roger from Australia

Roger and I often chatted because Hawaii time and Australia time coincided in the evenings when much of the US Mainland and Canada were asleep. I would post this or that complaint I had, and sometimes he’d be the first person to read and respond. Roger was on the high functioning side but did not work. He was a big guy with a gray beard and bright smile and he volunteered at the golf course where he got some perks like lunch or a round of golf.

Like most of the people who frequented the forum, Roger liked to hide his sadness with comedy and laughter. It took him a long time to come to terms with his disability, but he accepted it now and let recovery happen. He liked to listen to my stories from that period of my life when I’d often ask dumb questions like if it was ok for someone with schizophrenia to start a family, and if I could work as a peer coach over the long run so I can be independent like Steve.

Roger liked to talk like someone who had made it out of the deep unhappiness that settles over all of us during the early years of the diagnosis. Once we hit the age where we are older, and had no chance of starting a family, school or career, many of the people became much more accepting and free in their quest towards recovery. Roger was one of those people. He, too, had lost his wife due to schizophrenia and spent years in and out of the hospital. He now lived in an apartment with his dad, and did ok in terms of financial security and stability.

It really moved me to hear him talking about his projections of the future, which felt very realistic and gave me the opportunity to use his experiences to prepare for my own. He said that life was in a stable place for him in his mid 50’s. His dad had more or less accepted his diagnosis and occasionally bought donuts or other treats in the morning to acknowledge Roger’s presence. He had a welfare stipend as well. However, age had worn him down inside and his anxiety multiplied as his time was nearing. His dad did not own the apartment, and couldn’t leave it to him after he passed away. Roger says that, at that time, his only choice might be to move into a group home like the rest of the Aussies who had crazy or debilitating disabilities.

He liked to see my post of Hawaii’s beaches and hiking trails, and those images probably brought him a sense of hope and belief as well. He wanted to believe that there was more to this world than demons and money, and that beauty existed, too, in those who walked in the image of God. This couldn’t be all there is to life, so he continued to choose to stand on the right side of history.

Anita’s Destination Wedding

Anita often felt that the boys she found online often did not fit her desired criteria. One day, she posted online that she had gone out to lunch with someone she liked. He was half Indian, half British and had a master’s degree and a full time job. It was the first time, on this forum, that I had seen anyone find a partner, much less someone they actually wanted to date. She was a very shy person, and he was someone who could get her to come out of her shell and become happier.

Anita decided to spend less time on the forum since meeting this boy, though she would occasionally post about how the restaurants he took her to were too expensive, and that she needed to look cute for an upcoming date and didn’t know what to wear. It felt like, over the one year that I was very active on this website, I had learned the stories of many of the people who came and went, stayed long term or just needed an occasional place to vent. Almost everyone had some goal that they wanted to achieve – for example getting an online degree in computing, lifting weights, helping their kid apply to preschool, or just making it through the day. Most times, these goals or ideas never materialized into reality. Someone relapses, someone gets mugged, someone loses their housing… year after year they hold onto hope, and end up going nowhere.

Sometimes this is how I felt, too. There were days when I wanted to make my parents proud, and let my story end happily, just like it did for Anita. Several months had passed, and she announced that this boy had proposed to her. She said “yes,” and they were going to have a big wedding. Anita said that because she had so many Indian relatives who wanted to attend the wedding, she had to make it a destination wedding so that fewer people would show up. She mentioned that her entire village, traditionally, would be invited, and it was not the kind of wedding she could afford. So, they decided to hold the wedding at Disneyland in Paris.

That was the last time that I heard from Anita, though I imagine that she and the boy are probably doing well now. Perhaps she was ready to start new goals or achieve new dreams, such as starting a family or finishing her education. For the younger women on the forum, this was the kind of fairytale that many of them, including myself, secretly longed for. Most of us had lowered our standards, some more than others, and really aspired to find someone decently successful who was willing to accept their disability. Most stories on the forum ended in sadness and frustration, and it was the first and only time that I knew of someone with schizophrenia who got married after their diagnosis.

Steve’s Dream

Steve continued to be a regular on the schizophrenia forum, and people sometimes joked that he was like one of those hustlers who worked long hours so they could treat themselves to a nice meal or a new tattoo. He was mugged a second time in his home, and lost his television and other electronics. Since he couldn’t afford new ones, he said that he had to spend some time living without these necessities.

He had found a third job at another community college, also teaching Biology, though he might’ve lost the job because he couldn’t get most of his students to pass his class. He joked that one of his students said that he was “weird, in a good way” on his final evaluation. He attended a metal concert in a nearby city, and nearly lost his secondhand car driving through the icy, unkept road.

Schizophrenia had crushed the goals and dreams of most of the men on the forum, but they often still hoped to meet a lost girl at the psychiatric ward or support group who actually liked them back. They fantasized often about a romantic escape, the chance to leave it all behind, or just hearing good news for once instead of more sadness and tragedy. Most people on the forum dealt with aging parents, social anxiety, or unstable lifestyles. It was a testament to the human spirit to keep imagining a better life, even in a place of such harrowing darkness.

As they got older, these goals sometimes changed, and there were many people who just wanted life to be kinder to them and show them the empathy that they needed in those final days or hours. They no longer thought about escaping their confining situations or booking a one way plane ticket to Japan. However, there was an undying feeling in people like Steve and Roger, to play the hero one last time and go all out in style when their time had neared. Many did plot getaways, then plot their own acceptance, but life often broke all their dreams in the end except the last – to leave the world a better place than the one that they had found.

Roger’s Birthday

It was early in the winter of 2019 when I partially relapsed with schizophrenia symptoms. By this time, I had developed insight. Though I still had delusions popping up in my mind, I could tell fact from fiction most of the time. That was when I began to write bizarre and unusual things on the forum. I posted photos of people going to Hell, yin-yang symbols, bird cages, and all manner of posts that arose from my delusions. This did not bode well, and, a month later, I found that I had been banned permanently from the schizophrenia forum. Looking back, it was my time to leave the forum because people rarely stayed around for more than a few years, and the community was always changing due to new faces and changing circumstances.

Roger was the last person that I remember talking to on my final days on the forum. It was his birthday and he was having lunch at the golf course with his family. He had a big smile on his face that was a mix of pride and sadness. He looked like someone who did not want his family to feel his pain on a day like his birthday. I recall that he was one of the people on the forum who genuinely wanted to get to know and befriend me, and had often acted as the voice of reason when I asked dumb questions about my love life and career. I shared with him a photo that I took from my trip to China that year, and promised him that I would return the favor one day when we all went to Heaven.

Before I knew it, I was told that I had been banned on the forum for making inappropriate comments. I haven’t heard from any of the members of the forum since, besides the one person who I knew from Hawaii. Sometimes, I think back on my friendship with Roger and it helped remind me to act rationally instead of follow my instincts, especially when it came to being released from work, fighting with a friend, or going on dates with the intention of meeting someone like the person Anita found. I hoped that he found happiness over his sorrow over the loss of his wife, and that he became the superhero he wanted to be in spite of his symptoms. One day, I hope to see him genuinely happy, and free of the dark clouds that held him back from success.

The People of the Internet

It’s been ten years since I was first diagnosed with schizophrenia and at least six since I had last been to the psychiatric ward. Looking back on my experience, both online and in-person, I feel that the chance to meet new people has broadened my understanding of my community and the mental health situation around the world. I was never someone who looked down on people with disabilities or worked low income jobs. However, the experience had nevertheless changed my outlook, especially socially. I realized how it felt to live in a world truly lonely, with nobody around who knew how it felt to live with debilitating anhedonia, confined to a life in and out of psychiatric wards and without the prospect of marrying someone who you could’ve taken had you not been diagnosed.

Friendship, companionship, and understanding were some of my deepest yearnings in the early years of my diagnosis. I wanted to be around people who smiled at me, who accepted me, and to meet all the people who I didn’t get the chance to meet during my days in a top prep academy or college. Most of all, I had spent my life working towards these idealistic goals of creating a better world, and I never realized at this time that heroes don’t always come from school, they are made in every walk of life.

The schizophrenia forum was my first opportunity to have sane conversations with people living with the illness on how to manage symptoms, live a healthy life and prepare for the future. That outlook wasn’t especially fantastic or easy, and often people struggled with multiple illnesses with age, lived lives of isolation where they are ashamed to see even family, resided in confining group homes or shelters, and never really finished the goals they set out to complete in the early years of the illness.

The forum had changed me by giving me the confidence to pursue my chosen goals and live with people who did not judge my living situation. When I posted my dumb questions about finding a boyfriend or working a white collar job, they made me feel like my failures did not define me, that stability was possible, and there was a community where I did not have to put on my “normal” face.

I have in-person friends now, a healthy lifestyle and writing projects to keep me occupied. I have no doubt that just as they have made a positive impact on me, so have I on them. Perhaps the world would be a healthier place if people recognized those invisible people who walked on our streets, acknowledged them, and gave them the opportunity to prove their worth to the rest of the world.

Sarah Zhang is a Hakka American immigrant who moved from a northern port city called Tianjin, China to Hawaii at five years old. For many years, her mom worked as a housekeeper while her dad, a science prodigy from a fishing village in Anhui, looked for work. Sarah worked her way up to a scholarship student at the top private school in the state, Punahou Academy. She later attended Duke University and graduated with a major in English. She was diagnosed after turning in her graduate school applications with schizophrenia. For the duration of over a year, she was talking to herself, imagining that she had a make-believe boyfriend and learning about magic. Sarah recovered her sanity since then, though the year-long episode created a debilitating brain damage that doctors say couldn’t be cured. She hasn’t been back in the psych ward in over six years. Her favorite authors include Junot Diaz, Maxine Hong Kingston, JM Coetzee, Virginia Woolf, Sylvia Plath and Don Dellilo. She is currently getting her Master’s in English at the University of Hawaii at Manoa. Look for her latest updates on her website: sarahzhangnovelist.com.