From Isolation to Community and Change

Forty years ago, I felt like the loneliest man on the planet. Nauseous and upset from seeing my dad, once again, an inpatient at the Northville State hospital near Detroit, I sat in my car in tears. I felt like no one understood my pain. It seemed like there was no one on earth who I could talk to about this heartache. My dad had severe bipolar disorder, which often required months of state hospital care to bring him back from mania and psychosis.

I stumbled back to college that day and told my girlfriend it was “not that bad.” I didn’t have the courage to tell her the truth: that I was haunted with images of him full of anger or drooling while sedated. I didn’t really talk to her about any of it, even though she was a kind person. The space to do so in our culture, and therefore in our relationship, simply didn’t exist. I also couldn’t really talk to my mother or my siblings about his condition. Dad’s condition wasn’t a secret to us, yet we all felt so much shame that each of us suffered alone, in silence.

Little did I know that at the exact same time I was at Northville State, an incredible group of people was coming together to form what is now NAMI, the most powerful and amazing organization for these challenges. These brave mothers and fathers bound together to support each other to fight for better care and research for their adult children’s psychiatric conditions. As with millions of others, NAMI would one day take my life’s greatest heartache and give me a community.

Becoming a Psychiatrist

When I was a kid, I tried to make sense of how a wonderful man could be throwing beer bottles and screaming in the front yard when I came home from school. I wanted to understand what was happening to him. This is why I became a psychiatrist. I thought I could understand and help my dad and others like him. I thought, maybe if I was lucky, I could help people who lived with this double-whammy of mental illness and shame.

Most people did not understand my choice of profession. When business folks and accountants in my family learned I was going to medical school, they hoped I would select a practice that was status-oriented like surgery or cardiology. But once I knew this pain, there was no other choice.

My dad was a traveling salesman for Chef Boyardee, and he had hoped I would follow in his footsteps professionally. I did not become a salesman, but I did follow a professional path that was deeply informed by him by trying to make sense of what had happened to him. Mom and Dad didn’t understand my interest in psychiatry — it was just too close to home.

Long after I was in residency, my dad would still ask how things were going in the Operating Room. I’d say, “Dad, I am a psychiatrist. We don’t do operations.” He would quickly pivot to talking about baseball, a favorite respite we both loved. Boston Red Sox left fielder Ted Williams was his favorite player, in part because he hit a home run at his last at bat. My dad would often say of Ted, “He hit a home run on his last at bat, put the bat in the rack and never looked back. He went out a winner.”

Finding My Place

In my application for medical residency, I wrote an essay about my dad, my love for him and my quest to specialize in psychiatry in order to understand and help treat these shame-prone illnesses. Ten of the best residencies in the U.S. ignored my essay completely. One famous psychiatrist ridiculed my essay, saying that personal experience was “the worst reason” to go into the field. I wondered if I had a place in this field of stodgy and academic people. It didn’t look good.

Finally, one interviewer, Dr. Ned Hallowell at the Massachusetts Mental Health Center in Boston, told me that my family experience was a great advantage — that this personal experience could be useful in my practice of medicine. I moved to Boston because of this affirming response and found a home in that residency program. I am still on their faculty three decades later.

Getting Involved with NAMI

I didn’t find NAMI; it found me. In the early 1990s, Rona Purdy, a NAMI board member, heard about a lecture I gave to medical students at Harvard Medical School comparing my dad’s experience of a life-threatening mental illness to my own experience of having cancer as a resident.

I asked the students to help me understand how I was a hero for having survived a difficult medical illness and he was a pariah for having survived a difficult mental illness. I apparently had a “respectable” illness and he had an undesirable one. I received casseroles and “You are a hero!” sentiments. He got isolation at all turns. Of course, medically there was no real difference: Both of us could have died without good care and family support. Yet I also knew that society has not always been well-informed about or accepting of cancer as a treatable illness, and this gave me hope for the future and changing attitudes about mental illness.

Shortly after my lecture, Purdy flew to Boston and taught me all about NAMI. I began to volunteer at NAMI almost immediately. I realized that day we had lunch that I was home for the first time in my professional life. And thanks to NAMI, I was able to tell this exact story of injustice to Congress at mental health parity hearings.

Working with My Community

NAMI has moved mountains in these four decades. Mental health parity is among the greatest pieces of legislation in the entire field of health care — although it still has a way to go. There are almost 300 early psychosis treatment centers across America, thanks in large part to NAMI’s advocacy and clarity of purpose. NAMI Family-to-Family has helped hundreds of thousands of people with mental illness and their family members. NAMI Basics and Homefront both have peer-reviewed evidence to support their efficacy.

I was recently at NAMI Mercer County in New Jersey and they were collaborating with a local school on a suicide crisis, using Ending the Silence as a key tool. The list of NAMI accomplishments is what pathologists might call TNTC: too numerous to count.

However, NAMI’s work is never done. The forces of discrimination, prejudice and unequal access to care are mountains we have yet to fully climb. The complexity of the brain and the challenges it poses to the development of better treatments is humbling. What’s different, though, is that the lonely kid in me knows we will climb these mountains together.

On my dad’s deathbed, he finally told me he was “sorry for all the hard times.” I was stunned and moved. Had NAMI’s impact on society helped him say this one and only admission of vulnerability? We held each other while having our first discussion after decades of heartache. Our love always had a cloud over it, but this conversation lifted the cloud. Like his hero Ted Williams, dad went out with a home run. NAMI gave us both this human victory. NAMI has done so much for so many in its first 40 years, it gives me great hope to think of what NAMI will do in the future.
 

Ken Duckworth, M.D., is Chief Medical Officer at NAMI.

This piece was originally published in the Spring 2020 issue of Advocate.