A Sane Struggle
I wrote a book when I was 17 about traveling alone on the trains of Europe. I was a publishing major at Emerson College in Boston. I thought I would be a successful writer. Instead, the day after graduation, I found myself in a hospital bed, unable to communicate rationally with anyone.
That was a decade-and-a-half ago. Since then, I’ve been hospitalized about nine times, including one Christmas and a New Year’s Eve, my dad’s birthday, and a Valentine’s Day. But none of these hospital stays have been quite like the one that May morning when my parents first took me to a psychiatric hospital in Massachusetts.
It was the day after my graduation ceremony. During the ceremony, I bolted from the row of graduates and never made it to the stage to accept my diploma. My parents found me wandering in my cap and gown in the lobby of Emerson College’s Majestic Theater while Ted Turner was still giving the commencement address.
I realized much later that I was clinically psychotic that day. Learning that I suffered from schizophrenia has made me do many things differently from what I’d planned. Instead of being the successful high-powered professional I’d envisioned, I simply wrote a book about my experience. Much to my surprise, it led to a career as a public presenter concerning mental health. During the past three years, I have spoken at libraries, colleges and universities, and public forums, sharing my story and views of successful responses to mental illness. I’ve also coached others, offering methods to confront the problems their illness creates.
Our pasts can provide perspective to our present and give our future a new and extraordinary dimension. Often in therapy, psychiatrists and patients talk about the past that has hurt us. Sometimes there can be no reason for the painful things that have happened, but we can learn from them. We can also go one step further—beyond any rational “analysis”—and rewrite our life story.
The past is not the just past, but an integral part of our present. And our present must not be only our present misfortune. We can develop new themes in our lives that defy our hardships and create context for what is to come. These themes may return years later with new twists of triumph or tragedy. They are our themes, and they belong to us.
Meanwhile, we can celebrate our present and future by creating a healthy now.
I had a chance to return to Emerson 14 years later, after that day in May of 2000, when I was unable to make it to the stage to accept my diploma. A group of Emerson students invited me after they had attended my keynote address at a symposium at Wellesley College on mental health on college campuses. When I returned to speak at Emerson in 2014, my father was dying of cancer. It would be the last time he heard me give a public presentation. Both of my parents were there. They had also been at my aborted graduation, so we never shared that experience of my receiving a diploma. The talk at Emerson went wonderfully. Afterward, the provost surprised me by officially presenting me with the diploma I had missed receiving on that day in May, nearly a decade-and-a-half ago. My parents were able to finally share this moment with me in the context of my having rewritten my story.
Loss is much more than a single event. In mental illness there is often a break when life as we have known it—a life within our minds, a life with others—is irrevocably altered. The onset of illness may also be the beginning of many lost moments and memories.
Healthy people can understand loss by losing loved ones or by realizing that time is passing. But many with mental illness feel a loss every day, often every hour of the day. Psychiatrists and those of us with mental illness sometimes focus too much on losses and not on the trajectory of our lives—the past, present, and future.
Patients should be viewed as individuals who are a continuation of their pasts. Also, no matter how dire their diagnosis, patients need to be given a reason to be hopeful about the future. When I was first admitted to the hospital, this didn’t happen. Despite having toiled for four years to earn my degree, I was instantly reduced to a “psychiatric patient.” I emerged a month later knowing nothing but my newly confused mind. I had become a figment of what I had known myself to be. No effort was made to help me reconstruct my life story in its new context. My only framework was my illness.
Others with mental illness have had similar experiences. Many patients rage at being treated as a diagnosis, with all of its associated stigma, rather than as individuals. Consequently, patients can lose a sense of purpose, a sense of self-worth. It is a loss of the relation between the energy life gives and the energy we give it. There is little dynamic between our surroundings and ourselves in relation to others. We are caught in disorientation to our environment.
Sometimes the world is a rude awaking. Its raw sorrow confronts us, and it seems like there is no going forward in a reality that demands action. Sleep is a welcome relief, our bed a refuge from all of our problems. After my first hospitalization for schizophrenia, I would awaken and hear voices—whispers that may or may not have been real. I later heard whispers of those in my house. I thought they whispered so as not to disturb me, as though I were a fearsome king of madness. I felt special but in a bad way, a lonely exception, something to avoid.
Mental illness may break the bonds we share with loved ones. Some of them remember how inappropriately we may have acted and may be afraid we will act that way again. Upon waking we must confront this in all its reality. We then must exist in a world that is alienating. There are philosophical reasons, there are psychiatric reasons, but the crucial issue is to figure out how to function, sometimes even to get out of bed and continue on, every day.
After my diagnosis, I cried for months when I woke in the morning. I felt shame and could hardly face another person, meekly passing by others I was living with to sneak a cup of coffee and return to my room. The feeling subsided as the morn-ing passed, and soon I could confront the day. I realized that not getting out of bed would be even worse and would mean I had fallen prey to the illness. I realized that I must survive.
The answer to helping patients is to expose them to life, not isolate them with their illness. Relief from this struggle comes through finding a purpose for living, and living without a purpose is just surviving. Having purpose is necessary for life to be a sane struggle, not an insane quest toward accomplishment. A similar madness is trying to deal with society’s stigma. A better approach is to help the patient explore the meaning of life. This can be cultivated into a positive psychology that includes the struggle of all people, to find purpose despite terrible feelings of need.
Despair is an opportunity. Realizing we are experiencing the essence of life’s condition is an empowerment like no other. This is living on the pulse of life.
Once we realize we are living the human condition, time opens up. We have the time to activate our goals and empower ourselves. Recovery follows, and we can blossom into a beautiful power. No longer are we merely a manifestation of a devastating disease.
I decided to create a perspective outside the shame and sadness I have felt for having schizophrenia. This decision was an awakening for me, many years after my diagnosis.
The day after my first admission in May 2000, I gradually realized I was in a hospital bed. I could hear the crinkle of a plastic mattress, and my pillow felt strange—sanitary, but in a dirty way, as if I were the one who made it dirty. I saw a face through a square piece of glass on the door every 15 minutes. I could hear a murmur of voices outside. I dozed off and on.
One of the first things I noticed upon waking was a jade plant my parents bought for me. Even though it was just a green plant, it looked like a million “get well” cards and flowers. I finally felt safe and cared for; I trusted that I was going to get the help I needed.
I moved into a halfway house a month after my college graduation and became exposed to people very different from those in my typical social circle. People all around me were very sick. In lucid moments, some told me stories. I listened and tried to draw from my compassion, but I still had my own hate and horrors to live through.
Now I have my own stories to tell. I present around the country to universities, libraries, and various mental health organizations on topics ranging from quality-of-care issues to family dynamics. Sharing my story has broadened my perspective, and I hope it has offered insight to others.
I think about how society views people who need help. There is often the belief that the poor and disabled don’t contribute to progress in society. But their life experience of tragedy and their struggle for love and belonging is really an archetype—part of the story we all share. This is a sane story, and one that should be told.
I cannot ignore my struggle, because it is in my mind every day as mental illness, but I can focus on what happens inside, away from my sometimes clouded mind. I can be a part of society and contribute to it by living a dedicated life, even when society’s progress is off course.
During years of speaking, I have heard people’s stories that made me realize the universality of the human experience. We all face adversity in different ways. Pain should not be ignored, and our hardships should be shared. This is the only way to make sense of the human struggle and to give meaning to it in mental health.
