10-17-14 FROM MY FILES FRIDAY: Four years ago, I explained in a blog why I am a lifetime member of the National Alliance on Mental Illness (NAMI). I occasionally receive emails from readers grumbling about what NAMI either has or hasn’t done. But nothing that has happened since I first joined NAMI has caused me to lose faith in it. Perhaps this is because the heart of NAMI to me has always been its people and the common goal that all of us share: helping persons with mental illnesses. Patti and I support NAMI monthly with a donation because I believe in NAMI and its programs.
NAMI Helped Me, first published June 28, 2010. **
When I was a Washington Post reporter, I did not believe in joining groups or organizations. I needed to be independent in order to be objective. Then my son, Mike (Kevin), became sick and the first thing I did after I finished writing my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, was join the National Alliance on Mental Illness (NAMI.)
Why?
The first reason was a selfish one. I was not the first parent to be completely baffled by our badly fractured mental health system. Nor was I the first to have a son become entangled in our criminal justice system because of his mental disorder. I realized that other parents would be the best guides for me when it came to helping my own son. They would understand my fears and the emotional roller-coaster that I was riding. They would be able to offer me advice that was based on practical experiences.
I also realized that being involved in NAMI would help me keep my son’s problems in perspective. Oftentimes, when I would feel as if I had hit bottom and was losing hope, I would attend a NAMI meeting and listen to someone recount what had happened to their son or daughter. Stories about recovery gave me hope. Stories with less happy outcomes made me even more determined to change our system. I marveled at the resilience that NAMI members showed. I remember listening to a mother in Miami whose son refused her help and was homeless for 12 years. She drove by the corner where he panhandled on her way to work each day and often arrived at her job in tears. I remember two parents in Philadelphia whose only son committed suicide. They were both psychiatrists yet they could not save him. I remember a telephone call that I received from parents whose son was on death row.
I also heard incredible stories of recovery, such as: the wife who had been involuntarily committed more than a dozen times but had been doing well for the past two years and was back with her family; the father who’d returned to work after battling major depression; the graduate who’d recovered from a debilitating breakdown after having been diagnosed with schizophrenia.
NAMI became, for me, a lifeline.
Which brings me to some of the other reasons why I am so proud to be a lifetime member of NAMI. NAMI offered me excellent educational programs. Family to Family is a course that helps parents and siblings deal with having a loved one who is sick. In Our Own Voices is a fantastic speakers’ program that puts a human face on mental illness by having consumers deliver positive testimonials that prove recovery is possible. Stigma-busters helps educate the media and fight prejudice. Peer to Peer training is helping transform mental health services by giving persons with mental illnesses a strong voice in their own treatment and the recovery of others. NAMI Walks raises much needed money and increases public awareness. I am especially proud of how NAMI has reached out to different ethic groups and has been active in explaining the importance of understanding cultural diversity in treating mental disorders. And, of course, I can’t mention NAMI programs without talking about its leadership in pushing Crisis Intervention Teams, perhaps the most successful program in America when it comes to educating law enforcement and helping bring a team approach to solving community mental health problems.
Having spent 36 years in Washington D.C. as a reporter and at one point covering the U.S. Congress, I understand the importance of having a strong advocate on Capitol Hill and NAMI has been an effective voice there for all of us. One of NAMI best tools in both educating the public and exposing our failing system has been its Grading the States report, which gives a report card grade to every state based on how well it is doing. These grades have gotten widespread coverage in the media because they expose how much we need to do to repair a mental health system that has been described as being “truly insane.”
Of course, NAMI isn’t perfect. None of us is happy about how much of NAMI’s budget comes from big pharmaceutical companies. We also disagree in NAMI, often heatedly, about such emotional topics as involuntary commitment, self-determination, assisted outpatient treatment, the continued closing of state hospitals, and even expanding the role of consumers within our own ranks. But even during the worst of these arguments, when I have stepped back and taken a deep breath, I have realized that everyone in the room feels passionate because they care so deeply about persons with mental disorders. Our hearts are in the right place and that is what bonds us together.
I like to say that NAMI is not like the ski club or your local wine tasting group. Few of us joined because we thought, ‘Hey, that looks like a cool group to attend.” But since I became a member, I have made friends with some of the finest persons I’ve ever met and that has been a much treasured bonus.
Because of my book, I have been able to visit NAMI chapters in 48 states and the one commonality that I have found is determination. Against some of the cruelest challenges and indignities that life can slap them with, NAMI members pick themselves up, dust themselves off, and like a boxer who doesn’t know when to quit, they stand up and prepare for another punch. We are relentless because we must be. We are hopeful because we believe in recovery. And we are successful because we know that our course is just, fair and right.
**This version has been updated and edited.
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