I entered adulthood knowing that I had a defective heart. Literally, this was in the form of a mitral valve that might someday need to be replaced. Figuratively, it was because I had grown up hearing psychiatric terms being applied to siblings, along with the diagnosis “born without the ability to love.” I knew that the fact these descriptions were applied to siblings but not myself was random. Instead of concluding that the description and terms were inaccurate and unjust, however, I looked into my own heart for this ‘ability to love’. I knew I had to hide the fact that I could not find it, or risk the same fate as my siblings.
I’ve learned in my life and work that — though it may be fundamental — love is a tricky concept. Many if not most of us have heard the word spoken when we know it represents anything else — a demand, a warning, a threat, or a punishment. Many have experienced the word in association with horrific acts and enter adulthood wondering whether this thing that’s expected of us even exists, and by what miracle we might be able to perform it.
I spent my early adulthood doing ambitious things that I thought might compensate for my heart’s deficiency, and obscure that fact that I was not able to do it. It seemed to me that only a miracle could result in loving or being loved — a theme I’ve discovered within many people’s experiences that get labeled psychosis — and chose to do something that at the time seemed like it would take a miracle to achieve, which was making movies.
I’m proud of the movies I made, but lost faith that making movies would lead me to knowing what I needed to know, let alone convince (or fool) someone to love me. I turned toward becoming a therapist but as I studied the DSM I began to realize that all the terms I’d grown up hearing were specious. I was studying and working in the William James building — a literal ivory tower at Harvard, named after a man sometimes referred to as the father of American psychology — and thought about how appalled William James would be at what was being done literally in his name. The DSM was like a sweater that falls apart as soon as you tug a thread, and I went looking for other perspectives. I read Bob Whitaker’s Mad in America when it came out in 2002 and realized that the whole psychiatric enterprise is built on a foundation of sand.
Mad in America reads like a mystery novel about the history of psychosis treatment, in which the central question is “could we possibly have been — and continue to be — this stupid?” (I won’t give away the answer, but if you are reading this you probably know how it ends.) When I saw on the dust jacket that Bob and I lived in the same city, I called and to my surprise we soon had lunch and have been friends since.
At the time Bob seemed pessimistic that after all the work he’d put into the book, there was not much hope of denting the pharmaceutical industry’s edifice. At the conferences I went to, however, Bob was already becoming a hero to people whose experiences had been systematically ignored, belittled, and derided.
So when I saw that Bob was accepting any invitation to speak — occasionally paid but mostly not — while living like a monk, I offered to do whatever I could to help. Booking travel, picking up dry cleaning, whatever I could. When Bob told me he was thinking of writing a book to explore the apparent fact that the advent of the “miracle” psychiatric drugs — antidepressants, benzodiazepines, and second-generation antipsychotics — seemed to coincide with a shift from psychiatric episodes being transient to being long-term if not permanent disabilities, at first I tried to dissuade him, saying that the first book had nearly killed him and he owed nothing to the cause.
Nevertheless, he got a contract to write the book. I saw Bob come back from each meeting more committed, until it felt that the community of people who had been wronged by the psychiatric miracle drug myth had become, essentially, his community. After Anatomy of an Epidemic was published, Bob decided to create the Mad in America website and invited me to be its first editor. I leapt at the chance and poured myself into it.
I knew I was helping to create something that could possibly change the world. At the same time, I was aware that I was driven by fury at all that I had seen growing up, and that I continued to see as an adult. The fury drove the long nights of editing while attending a graduate program during the day, but after about four years I burned out. I needed to be driven by something other than anger and, as the people with whom I’d grown up and hoped to help died, I needed to find a way to open my heart and engage in a healthier way. I needed to find a way to truly heal my defective heart.
This led my partner and I to Open Dialogue training and practice, with a mixture of successes and failures. And what I loved most about it was finding myself with couples and families who were trying to do what I had been trying to do; heal their broken hearts and learn to love. This I could see doing for the rest of my life.
Which leads me to what happened earlier this month. After a year of increasing health struggles, we discovered that it was time to replace my defective heart valve. I was scheduled for open-heart surgery a few days later at the nigh-comically named Lovelace Heart Hospital, which turned out to be not only a first-rate facility but the perfect place for me. It was expected to be a routine 3-hour procedure, but as soon as they popped the hood I nearly died, taking three shocks to bring me back and a seven-day induced coma while they figured out how to close the hood again.
When I came to in the ICU, I quickly learned how many people had been pulling and praying for me; how many people to whom I owe gratitude; many more, in fact, than I will ever even know. I realized that there is no room in this second life for anything but gratitude — and love. Yes, the anger I’ve felt was arguably appropriate to the circumstances, but I’ve had my time of storming the streets and it wasn’t what was going to get me to the life I wanted. I realized that I owed no allegiance to the thoughts and feeling that had plaqued my first life, which I had given up thinking I could ever be free of… those thoughts and feelings were now gone. When I saw an unwanted thought or feeling on the horizon, I could flick it away and redirect my attention to the overwhelming luck with which I am here at all, and my gratitude to all with whom I have the good fortune to share this miracle.
A couple of days after I came back to life I talked to Bob for the first time. Along with welcoming me back he said that Mad in America would not exist without me. I do not believe for a minute that this is true, as evidenced by all the passionate and talented people who have taken it further than I could ever have conceived of. But, for the first time I blurted out what had always been true, “Bob, I did it because I love you.”
I realized then that, for me, this project has always been about love. The competing interests we explore in these pages are all variations of ideas on how to love; our challenge is to make sense out of the harder road that ignores fast and easy answers in favor of the hard work of opening our hearts even when we are angry and afraid. This, I believe, is the measure of Mad in America’s success; can we find our way past fear and anger to loving each other. I have been blessed with open-heart surgery. Perhaps for others a blog will do.
