Death of an Advocate: Glenn Koons

Glenn Koons and Marlee Matlin

 

I first met Glenn Koons when I was invited to speak at a luncheon in Montgomery County, Pa., being hosted by the National Alliance on Mental Illness. It was one of the first speeches that I delivered after publication of my book and before my talk, NAMI Board Member Carol Caruso introduced me to Glenn. I was immediately struck by his easy-going manner. Carol bragged that Glenn was one of the first NAMI trained  Peer-to-Peer mentors in the entire nation. Glenn and I spoke for several minutes and I was impressed by his thoughtfulness and enthusiasm.

Our paths continued to cross during the coming years at various NAMI meetings and conventions. I was always happy to see Glenn and was thrilled when I learned that he had been one of only four NAMI peers who had been invited to the White House by President Obama to celebrate the 20th anniversary of the Americans with Disabilities Act of 1990.   Glenn wrote about the event for a NAMI blog.

A few weeks ago, I was asked by NAMI’s Darcy Taylor to write an article for NAMI’s VOICES publication. In my article, I mentioned three “consumers” who have inspired me. They are  Dr. Fred Frese, Diana Kern, and Glenn Koons. 

The day after I submitted my article, an email arrived telling me that Glenn was dead.

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Another Earley Advocates!

The featured speaker at the awards dinner at our local chapter of the National Alliance on Mental Illness was listed in the program under the name: EARLEY. But it was not me.

It was my son, the person whom many of you have come to know from my book:  Crazy: A Father’s Search Through America’s Mental Health Madness, by the name MIKE.  The NAMI meeting was the first time that he has ever spoken in public and he got a much  deserved standing ovation after he’d described his journey to recovery.

I am tremendously proud of him. Like so many others, our family has been through a roller coaster of events and emotions since 2001 when my son was first diagnosed with a severe mental illness. He’s been arrested and shot with a taser. There have been court hearings, four major breakdowns, repeated hospital stays, hours of therapy, angry words — so many angry words — even feelings of hopelessness and despair.

But for the past three years, he has been doing fantastic! He has been able to manage the symptoms of his illness. He is in RECOVERY and he is one of my heroes!

There are many reasons for his recovery, but he deserves the most credit. He has worked hard to get better. Fortunately, he had the expert guidance of a tremendous case manager. My son found a medication that helped him. And he had access to other crucial services that he needed!

I am blessed. I am telling you this to give you HOPE for your loved one. People do get better!  But why am I telling his story, when his own words can tell it better than me?

Here are excerpts from his speech. When you read them, you will understand why I am proud and fortunate to have such a wonderful son. I know many of you are struggling. Don’t give up. There were times when I didn’t think we would get where we are today.

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The Mysterious Human Brain

Does anyone really understand the workings of the human brain?  

One of the things I enjoy about traveling to give speeches is that I get to hear other people’s stories. Some of the stories are inspirational. They are about recovery. But others are sad. Regardless of where I go, I meet someone in the audience who has endured much worse than my son and me. Yes, my son has been arrested. Yes, he’s been shot with a Taser by police. But he is not in jail, is not homeless, is not belligerent, is not missing, and is not dead.  Those situations are a grim reality for many parents.

Occasionally, I hear a story that surprises me and that happened during a recent trip. It’s a recovery story.

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A Never Ending Debate

Mental Health America asked me to moderate a thought-provoking panel that featured four nationally-known activists during its annual convention in Washington D.C.

Kay Redfield Jamison doesn’t need an introduction.  Her memoir,  An Unquiet Mind, was the first book I read after my son, Mike, became ill, and it spent five months on the New York Times bestseller list.  She is not only brilliant and well-spoken, but also unassuming.

The other three panelists were new to me.

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Listening to a Peer

     When my sister-in-law Joanne was diagnosed with cancer, my wife, Patti, immediately began searching the Internet for information and one of the most useful websites that she found was a blog being written by a woman undergoing cancer treatment. Patti became a faithful reader and found this woman’s writings helpful and inspiring. Up until Joanne’s death last year, Patti felt that she, Joanne, and the blogger were in the same foxhole. 

     No one thinks it’s odd to ask for direction from someone who has gone through a life-altering illness  — except when it comes to mental disorders. Too often, persons with mental illnesses are ignored even after they have recovered from all symptoms of their illnesses. Part of the reason for this is stigma and the deeply held belief that persons who are “mentally ill” can’t be trusted to take charge of their own lives.  

 Let me be clear here because this is an emotional subject, especially among parents, of which, I am one. When Mike became psychotic, I did not listen to his ranting. I stepped-in and did what I believed any decent human being would do when someone they love becomes so obviously mentally unstable that they need an intervention.

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We Know What To Do!

Just before Christmas, I was the Master of Ceremonies for the 13th Annual Woodley House Movie Benefit in Washington D.C., which meant that I got to give a three minute talk about mental health before a movie was shown. As always, I spoke about how 18 percent of persons in jails and prisons have severe mental illnesses and need treatment not imprisonment. I talked about how 17 percent of the 130,000 homeless persons in our nation are chronically homeless, meaning that they move between the streets and jails and shelters – and most of them have severe mental illnesses and are not receiving meaningful treatment.

And then I announced some good news. We know how to help many persons with mental illnesses.

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