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  • Writer's pictureEmily Johnson

How Stigma and Untreated Mental Illness Shaped My Father’s Life

Mental illness is a deeply personal and often misunderstood challenge that affects millions of individuals globally. In observance of Mental Illness Awareness Week, I'd like to share my father's story, a brilliant and accomplished man whose life was profoundly impacted by the stigma surrounding schizophrenia. His journey, which began in the late 1960s, serves as a poignant example of the devastating consequences of societal misconceptions and the neglect of mental health issues.

Misdiagnosis and Decades of Gradual Decline

In his twenties, during a period when the understanding of schizophrenia was limited, my father experienced what was then termed a "nervous breakdown." The treatment he was offered - psychoanalysis – was woefully inadequate. He eventually stopped bothering with it. As the years passed, my father’s condition continued to deteriorate but he never sought any further treatment. Despite considerable gains over his lifetime in the understanding and treatment of mental illness, stigma meant it would be unimaginable to admit he had one. My father’s schizophrenia affected every aspect of his life. An ivy-league educated man who was considered by some to be a genius in his field, he fell from the heights of a high-status career, gradually accomplishing less and less while he spun his wheels – appearing to be working when he was not and earning less and less money for his family. His relationships crumbled, with the strain on his marriage becoming unbearable. Eventually, he found himself estranged from his children and siblings.

Homelessness and Despair

With divorce, my father’s life fully unraveled. He internalized the blame that was laid at his feet. The shame was evident when his mother died. Talking in his sleep one night, he voiced that he wished she had lived long enough to see him succeed. Unable to work, he tried to write a book on economics at one point but his inability to cope with his daily life and the loss of his professional network meant it went nowhere. I read his concept paper in my 20s. I now recognize it would have contributed fresh ideas to the field. Stigma meant his insights never moved beyond himself.

Ultimately, my father could no longer afford to pay rent and became homeless. The police found him wandering around the streets in a worn suit carrying his briefcase of papers, a familiar object that defined his goal of reestablishing a successful career. I imagine his manuscript was in there.

I learned of the situation when I received a “next of kin” call from a hospital. Just a few weeks earlier I had been frantically trying to reach him to make sure he was not in New York on 9/11. He often took the Path train, passing through the World Trade Center on his way to doing… something. With no other family willing to intervene, I flew home just days after flights resumed to Newark Airport amidst the security, chaos, and fear of the moment. I did not know what to do, how to seek help, or indeed, what mental illness he might have, if any. Social workers eventually placed him in a group home and he became a ward of the state. Now in his 50s, my father was diagnosed with schizophrenia. With such a late diagnosis, I sometimes wonder whether it was accurate, but I have gone with it. A name and an explanation for our lives was something I could at least grasp.

While he lived into his 70s, decades without treatment took a severe toll on his physical health. The stress, anxiety, and social isolation of his condition exacerbated diabetes and heart disease. I flew out again to meet him with my sister after congestive heart failure left him too frail to return to the group home. He now had dementia and was unable to make his own medical decisions. We searched for a nursing home that accepted Medicaid. The best we could do was ensure it did not have a record of abuse or neglect. He lived in this hospital-like setting for over 10 years. He eventually passed away after my sister mustered the courage to make a final single visit after years of coping by herself with this terrible relationship.

When my father died, he looked like he was in his 90s. I stopped mourning him when he passed – I had been mourning his life and the impact it had for many years already. But his sixth yahrzeit passed recently, and I sometimes still wonder what a brilliant mind could have accomplished if he had been given the treatment and support he deserved.

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