You Are Not Alone: NAMI’s First Book

I sat down with NAMI’s Chief Medical Officer, Dr. Ken Duckworth, to talk about NAMI’s first-ever book, “You Are Not Alone: The NAMI Guide to Navigating Mental Health.” Learn more about Dr. Duckworth, how the book came to be, what you can find in it, and more, through our conversation below (the dialogue has been edited for clarity and length):

 

 

About the Author

Gillison: Ken, can you start by telling us about your background? What brought you to NAMI and the field of psychiatry?

I'm a longtime lover of NAMI. NAMI's really been my second family.

When I was 8 years old, I was in the basement when I heard my father screaming upstairs and being pulled away by the police. This was my first exposure to a serious psychiatric illness. Not long after, we were in a U-Haul driving to Michigan in a snowstorm, and my family couldn't discuss it because of the shame and secrecy that surrounds mental health conditions. My father ended up being hospitalized probably 25 times because of the psychosis he experienced.

Nobody in my family was ever a doctor. I wasn't particularly interested in medicine. But I became a psychiatrist to help my dad. I became a psychiatrist to learn everything I could about all the things no one could talk about.

I’ve done a lot in the field of psychiatry — I’ve worked at schools, done private practice, run community health centers, worked with the unhoused population of Boston, worked on a dual diagnosis assertive community treatment team; I even became the Chief Doctor for the Department of Mental Health in Massachusetts. On my first day, they tried to close the department of mental health. Those jobs are really hard.

Throughout the years, I’ve also worked with NAMI, which I’ve always seen as my dream job. I’m really proud of my latest project, which has been writing NAMI's book.

Where the Idea Came From

Gillison: It sounds like from the first job to this job, you’ve been able to reach so many different parts of the community. What gave you the vision for this book?

In 1979, I was at Northville State Hospital visiting my dad — alone. It was a really difficult time. Little did I know, during that same year, 284 people were gathering in Madison, Wisc., to start NAMI.

In 2004, I began working for NAMI, and about 8 years later I took my wife to that same hospital where I spent so many years visiting my dad. I started crying, and a security guard pulled up asking if we were ok. Kelly told him, “We just need a minute; we had family here.” When I heard Kelly use the word “we,” it was transformational. For the first time it really hit me — I wasn’t alone anymore. And I realized just how powerfully comforting and hopeful it felt to not be alone.

That’s when I knew I needed to write this book for NAMI. It was just such a perfect way to leverage my professional expertise, lived experience and many connections in the field to help others know that they aren’t alone either.

What Makes this Book Different

Gillison: What do you hope people will get from this book? What's unique about this book?

This is the book I’d always wished I had — not an academic book or a memoir, but a practical book with real stories and advice. What do you do when your family member doesn't see that they need help? Or the insurance company won't pay for your care? Or you have a dual diagnosis and the trauma therapist doesn't understand what you need in terms of peer support?

What is NAMI's role in your experience of recovery? What is NAMI Family-to-Family or Peer-to-Peer or NAMI connections or any support groups? How do they make a difference for people?

The beauty of this book is that it truly is the embodiment of the NAMI community. 130 people across the nation in 38 different states share their names and their stories in this book.

There are five chapters on families. I interviewed eight people who lost family members to suicide. The youngest person I talked to was 17 years old; the oldest person was 100. I tried to cover the whole waterfront of experiences — from finding a diagnosis, to understanding the limitations of our diagnostic framework and where research is going.

This book really is for anyone trying to help themselves or someone they love.
 

 

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Daniel H. Gillison, Jr. is the chief executive officer of NAMI (National Alliance on Mental Illness). Prior to his work at NAMI, he served as executive director of the American Psychiatric Association Foundation (APAF) in addition to several other leadership roles at various large corporations such as Xerox, Nextel, and Sprint. He is passionate about making inclusive, culturally competent mental health resources available to all people, spending time with his family, and of course playing tennis. You can follow him on Twitter at @DanGillison.