Going out to dinner one night in San Francisco, a friend and I walked past a man sitting on the sidewalk, rocking back and forth and talking to himself. His hair was long and knotted and his clothes soiled and torn.
“That’s disgusting,” my friend said. “It would be better if people like that had never been born.”
“You realize you’re talking about my brother,” I said.
“No,” she said. “That’s different.”
It was not different. My brother Mark was a person with schizophrenia. He died in March 2014, six years ago. That’s us together in the photo, taken a few years before he died.
Mark started hearing voices when he was 17 years old, a typical age for the onset of schizophrenia. Until then he had been a normal boy who loved skateboarding, skiing, and soccer. Mark was ten years younger than I, but we had always been close, in part because our mother was an early addict of opioids, beginning when Mark was born, and was mentally unstable as a result.
When he first developed schizophrenia, Mark was secretive about his voices. He later said they had told him not to eat or to lie still on the bathroom floor and wait for instructions from the CIA. His voices sometimes shamed him, such as when they told him that our mother’s death was his fault.
As is the case with most people with schizophrenia, my brother was not violent. He once offered to show our niece that he could eat glass, but he never threatened us. According to the National Institute for Mental Health, people with mental illness are at higher risk of being victims of violence than perpetrators. They are routinely victims of stigmatization and ridicule, which happened to my brother often.
Mark received excellent care in Northern California where he lived. When my parents were alive, they did their best to care for him, mostly at home, and we were blessed that my father’s second wife was a social worker, who could help Mark navigate the services and resources available to him. I have two older sisters who also did a great deal to care for Mark, but we all realized at some point that he needed much more care than our family could offer.
Mark was institutionalized more than once, and often this was his choice. He later said it made him feel safe to be taken into “the unit,” as he called it, and sometimes restrained in a straightjacket, even if Green Berets continued to talk to him through the ventilation system. I visited him in one of these institutions and left in tears, not from sadness but from gratitude for the care (and insurance coverage) available to my lovely brother.
In the 1990s new medications allowed Mark to function more fully, and he continued to have access to caring mental health care providers. His mental illness eased with age, which was not unusual. His voices never left him completely, but they became less insistent. He moved from a group home to his own apartment, which he was very proud of.
During this time, I was in my late thirties and divorced. Mark was a sympathetic and constant friend as I went through breakups, mild depression, and other challenges of middle age. Mark showed up for me, calling me regularly and asking, “how’s it going?” He encouraged me to learn how to ski, which I did.
Mark graduated from Chico State University when he was 35 years old with a degree in mechanical engineering. He became active in the mental health community, worked as a peer support worker, and led an effort to establish a drop-in center for the mentally ill, allowing them to have someplace safe to go during the day, away from others who may wish they had never been born.
My brother’s recovery, as he liked to call it, was the result of a number of factors. His schizophrenia was not as severe as it is for others, he had family and community support, and medications worked for him. These were important factors. But I believe another key factor was the constellation of professionals who supported him — not only psychiatrists but also social workers, therapists, house cleaners, dentists, Section Eight housing managers, pharmacists, and others. What I witnessed over and over was the compassion and skill of these people and their ability to respond to my brother’s changing needs day to day.
Once when I was visiting Mark a social worker dropped by to check on him. The social worker sat on the floor as he talked to my brother. He only stayed for a few minutes, but the message was clear: we’re here for you every day.
I once met the head of mental health services where my brother lived and asked him how this semi-rural region of Northern California, Shasta County, could provide such great services to my brother. “We serve a small number of patients here,” he said. “That’s really all. We can take care of those who need help.”
My brother died when he was 50 years old, and it was a preventable death. He got the flu and because of his weakened physical health — from emphysema, diabetes, and other conditions — it worsened quickly. He did not get care soon enough, and that was no one’s fault. After his death, the drop-in center he helped to establish was named after him, as the Olberg Wellness Center.
I think Mark would be pleased that his death certificate lists his occupation as mental health worker. He was my brother and friend, and I miss him.
Policymakers and others: I hope you think of Mark’s full life when you are looking for what to do about those who are talking to themselves on the street. You don’t know who they are and who they might become. ###
Diane Olberg is a writer living in Seattle, Washington. She is writing a memoir about her brother Mark, mental illness, and their shared upbringing.