By Moryt Milo
Ken Duckworth knew NAMI needed a book driven by individuals with lived experience, not your standard doctor-patient saga. He sensed what would resonate with the readers since he too had mental illness in his family, having grown up watching his father suffer from severe mood swings caused by bipolar disorder.
As the chief medical officer for the National Alliance on Mental Illness, Duckworth wanted the book to run the mental health gamut from peer-based evidence to the latest research. He also needed the story to be inclusive and cover races, religions, and ethnicities. The project looked like a heavy lift, but he had been working on the idea for a decade.
Then COVID-19 struck and Duckworth said he caught a lucky break in the middle of a tragedy that gave him the opportunity to pen what would become You Are Not Alone.
COVID changed the mental health narrative from a “they” thing to a “we” thing, he said. The public was finally waking up to the fact that millions of Americans in the country were in need of mental health services and support. That the mental health system was broken and the nation was ill-equipped to handle it.
“I had a lot of media exposure in 2020. I was on CNN two nights in a row,” Duckworth said. “I had never been on CNN before.”
Since its publication five months ago, the book has sold 31,000 copies with all the proceeds going to NAMI. Duckworth isn’t taking a dime. His goal is to help as many people as possible as he tours the country in person and virtually, where he often has interviewees from the book join him.
“I absolutely knew it in my heart. I had to write it,“ he said, “and I wanted the book to reflect [NAMI’s] values.”
Purpose of the Book
Duckworth decided from the start he wasn’t going to tell the story of mental illness from a doctor’s lens. He wanted to flip the narrative and instead let individuals with lived experience use their real names and tell their stories. To Duckworth, the rationale was clear. For decades, professionals held all the authority and power, he said, it’s been hard for them to see the need to share it.
“When I look at all the books written by doctors, the acknowledgments are the same. ‘I want to thank my patients. They are my greatest teachers. But no one in these books are real people, I made them up.’ If you read a book and read about a real person just like me, maybe you won’t feel so alone,” he said.
Duckworth connected with dozens of families and individuals, and 125 people candidly talked about their experiences. Families opened up about losing their adult children to the streets and suicide. Other families talked about saving their children through assisted outpatient treatment. People described their frustrations trying to find proper treatment. Some talked about how the trauma of child abuse led to mental illness. No one held back, and yet, at the same time, lessons of hope and perseverance emerged.
Duckworth was wading deep into an intimate world and didn’t want to hurt anyone, he said.
When stories of mental illness paired with child abuse, he would say, “Are you sure you want this in the book because you don’t have to do this?”
For many, the experience was cathartic. They trusted Duckworth. They believed in his project and the NAMI motto “You are not alone.” They wanted to be heard and felt pride in contributing to the book’s universal purpose, he said.
Duckworth recalled his interview with David Michael Sabo, a heavy metal guitarist known as Snake, who formed the band Skid Row. Sabo was molested as a boy, turned to drugs, and developed bipolar disorder. Duckworth asked him if he was comfortable about exposing this information. Duckworth said, “Snake told me, ‘Ken, I am 57 years old with two Emmys. No one can hurt me now. If it happened to me it can happen to other boys. I don’t want them to have to be ashamed and turn to drugs.’”
“This is such a beautiful example of what we have at NAMI,” Duckworth said. “How lucky we are to be part of this movement.”
What the Experience Taught Him
Duckworth considered himself a recovery-oriented psychiatrist and advocate of the peer movement, but until he interviewed scores of people, he said, “Even I didn’t appreciate how great peers were and other families to families with lived experience.”
None of this was part of his psychiatric training, and yet Interview after interview pointed to the power of peers and families reaching out to others during critical times.
Person after person would say, the key thing was the Clozapine, but it was a family that walked them through it, he said. Or it was a specific therapy like DBT (dialectical behavioral therapy) but then the person met someone with similar lived experience who changed their life. That human connection proved to be the turning point for the people Duckworth interviewed.
He did a lot of listening and no matter the background, Duckworth realized their experiences were like his white middle-class family when it came to mental illness. They felt isolated. Their world suddenly changed and a haunting silence fell over them, he said. The reasons and stories might have been different, but the emotions were the same.
As he worked on the book, he thought about how the 43-year-old organization’s story was long overdue, and saw himself as the storyteller. But the true champions were the NAMI community, he said.
“I’m the author, but it’s our book. It took a village to create it and without the people in the book there is no book,” Duckworth said.
The NAMI book, You Are Not Alone, is available at Amazon. All the proceeds go to NAMI.