The Parents Network: Eyes, Ears, Heart and Soul

Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child's Descent into Madness, and Her Father's Struggle to Save Her. (reviewed in my last post)

Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.

Here is the episode of the show where you can download or hear our conversation.

We need each other. I can't tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben's first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.

Without you all, I don't know how we would have survived. Thank you - for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.

This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.

Together we can make a difference. My favorite cliche - because, like many cliches, it is true.

What Else is New?: Research, Reviews, Presentations

Quick Updates: (1,2,3...)

1. Ben Behind His Voices Comes to New York City!

Reserve and Come to Free Event!

Venture House, Inc. sponsoring this awareness raiser - hope to see you there!

On September 20th, 6 PM (reception) 6:30 PM (Book Reading and Discussion) -

Zucker Hillside Hospital - 266th St. and 76th AveG
len Oaks, NY 11104

reserve your (free) seat at events@venturehouse.org

(Venture House is a clubhouse programlocated in Jamaica, New York City that provides services to adults with mental illnesses) 

2. 4HealingHearts Radio show - Conversation about Mental Health, Hope, Info, and Empathy - 8/3/12

have a listen here! or here's the link to download it

Listen to internet radio with 4healinghearts on Blog Talk Radio

3. More BBHV Reader Reviews: Thanks!

Thanks to the BBHV Readers on Goodreads for rating and reviews, including these:Kathy says: What an amazing book! Very informative, but above all, the love the author has for her son, Ben, shines through - even when Ben is feeling his worst... I highly recommend this book to anyone, if only to learn more about mental illness & how it changes the life of the person who has it & the lives of his family & friends.

Leslie: "Wow. So humane. So moving. This is going to be the first book I recommend to therapy patients and families dealing with schizophrenia. "

btw, Goodreads is a terrific site for those of us who love to read. Check it out!

Richard Dreyfuss on Living with Mental Illness

Bravo, Richard Dreyfuss. Not only one of the best actors of our time, but he is speaking openly about his experience with bipolar. As reported last week in the Herald Tribune in this article by Barbara Peters Smith, Richard recently appeared in Sarasota, FL  to speak on “Living With Mental Illness” for the Mental Health Community Centers. The event was sponsored by the Sarasota Memorial Healthcare Foundation. 

In the accompanying interview, Richard says,

Dreyfuss:On an airplane the Delta magazine had an article about corporate executive depression. It said, “If you have any four of the next 14 …” and I had all 14.I got off the plane and called my psychiatrist and said, “we have to kick this into high gear. We have to start and get a solution. If we don’t, there really is no reason for me to go on.”

Herald-Tribune: About what time was this?

Dreyfuss: This was in the middle ‘90s. He said the wisest thing I’d ever heard. He said, “Richard, somewhere in your head is a faucet that is dripping either too quickly or too slowly, and we can help you.”  I can’t tell you the relief that lifted off my shoulders at that moment.

He goes on to share a lot of his experience, and his feelings about how the disorder has affected his life - from birth. Richard has joined the ranks of those of us - people affected by mental illness as well as those who love them - who refuse to feel shame or blame because of a physical illness of the brain. Someday, mental illness will receive the same respect (especially in research and availability of treatment and services) as other disorders. Each story, we hope, bring us closer to replacing stigma with understanding and a vow to improve the way things are.

Here is the comment I left on the site:

Thank you Richard, for sharing so honestly and openly. The fact that the medication that helped you the most was discontinued due to "lack of profit" is appalling. As the mother of a son who has schizophrenia (and I am so very proud of both my children, too!) I can tell you that while his medications are far from perfect, it is that  certain combination that has enabled him to stabilize enough to become an A college student and a valued part-time worker. As for our love? He always had that - but it is easier when psychosis is kept at bay.  The right medication can begin the process. Add love, support, purpose, community and understanding instead of stigma, and we've got a chance at realizing potential. I love your work - always have. And now I can appreciate what you may be going through as a person. Thanks for telling.
best, Randye Kaye
author of "Ben Behind His Voices:One Family's Journey
from the Chaos of Schizophrenia to Hope"

"A Moment of Clarity": Art, Bipolar Disorder, and Courage

I've just learned about a wonderful new documentary called A Moment of Clarity.  I had a long conversation with its producer, Kevin Cullen, and the hope for  this wonderful movie is the same as for Ben Behind His Voices: To reduce stigma, promote understanding, honor the talent and courage of those with mental health issues by focusing on one human story, and share their family's experience as well. Check it out! There is a preview on the homepage, and the movie will be available for screenings to interested audiences. Contact Kevin Cullen for more information.

The story, according to the website, is this:

Isti and His Amazing Art

“A Moment of Clarity” is an intimate documentary providing true insight into the world of bipolar disorder told through the life and art of emerging painter Isti Kaldor.(Pronounced: Ish-tea)

Having aspirations of touching people’s lives by attending medical school and becoming a physician was always his goal. Life however, had other plans. At the age of 19, during his sophomore year of college in Boone, NC, Isti suffered his first manic break and was diagnosed bipolar by the attending psychiatrist at Duke University Hospital.

Continuing to attend school in the midst of making sense of a new reality, he suffered another misfortune. A kayaking accident left him with a broken back. Then, the most devastating loss of all came when his mother, Stefi, lost her battle with lung cancer.

Reeling from his emotional devastation, an unexpected and wonderful thing occurred. Hospitalized during a manic period at UNC Hospital, Isti started to paint. Never having painted prior to his manic break, something in his mind was awoken the results of which were evident in the dynamic expression of his artwork.

11 years and 13 manic episodes later (four of which have occurred during the filming of this documentary), Isti, along with the help of his family, doctors and friends has endured. He has endured by living through what some would consider hell and has arrived at an unforeseen destination. A place where he can finally do what he dreamed of years ago. Touch peoples lives.“

A Moment of Clarity” is his story…

What's it Like?: 20 Greatest Memoirs in Mental Illness

Another great resource, especially if you're looking to contribute your experience professionally, and want to get your Masters' Degree online : Masters in Health Care . This latest blog post also lists the 20 Greatest Memoirs in Mental Illness. Whether you have been diagnosed yourself, are providing services professionally, or as a family member (lots of work, no salary!), getting the insiders' view is invaluable.If this were my list, I'd add the following memoirs:Henry's DemonsThe Day the Voices Stopped His Bright LightCrazyBeautiful BoySomeday I hope Ben Behind His Voices will make this list. When it does, I'll know that its message of hope and its dose of reality will have reached more readers - and that the message will spread.  Guess it's a bit much to expect to be on here, since the publication date is still a few months away! Want a peek? Amazon has it for you.

Bipolar Disorder on the Cover of People Magazine?

Well, Okay. So it's actually a gorgeous picture of Catherine Zeta-Jones.  Still, it brings one more mental illness into the light, with a matter-of-fact movie star who says it shouldn't be a big deal. I wrote my first-ever letter to the editor after reading this week's issue, which also contained a similar admission from Disney darling Demi Lovato.In case it doesn't make it to print (hey, I tried), this is what I wrote:

Dear Editor,

The best kind of applause to both Catherine Zeta Jones and to Demi Lovato for their courage in refusing to be ashamed about an illness that just happens to affect a body organ known as the brain. As Zeta-Jones so beautifully put it, “There is no need to suffer silently and there is no shame in seeking help.” And Ms. Lovato has, I hope, inspired others of her generation to be open and accepting of their diagnoses and the treatment that helps. As the mother of a wonderful kid who developed schizophrenia in his late teens (a common timetable for those with gradual-onset schizophrenia), I look forward to the day when my son – who, by the way, is in recovery with the help of treatment, patience, and love – and others with schizophrenia can speak as openly about their illness as well. While bipolar disorder is essentially a mood disorder and schizophrenia’s cluster of symptoms is more accurately described as a thought disorder, there are many areas in common. The greatest- and most shameful – of these is the presence of stigma. One day I hope my son – and the many others who have a diagnosed mental illness – will receive the same amount of respect, understanding, acceptance and research dollars as those who have illnesses that affect other organs of the body. Once again: brava, ladies! 

Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)Family-to-Family teacher and trainer for NAMI (National Alliance on Mental Illness)

Catherine Zeta-Jones, Charlie Sheen and kicking the shame out of mental illness

According to CNN, "Catherine Zeta-Jones, has checked herself into a mental health facility.
The actress, who has been by Douglas’ side since he was diagnosed with throat cancer last fall, is seeking treatment for bipolar II disorder, her rep confirms to CNN."

There is an excellent link to an article on bipolar disorder here - and brava for Ms. Zeta-Jones for not only getting help, but for choosing not to keep it a secret.  This takes courage, class - and, I believe, a desire to help others by example.

 As for Charlie Sheen - well, no one can diagnose from afar, but I sure would bet a cup of coffee on the fact that he, too, has bipolar disorder.  Just saying.  And, with acceptance and continued treatment, he could be back on Two and a Half  Men by the fall.  However - the road to acceptance is no short journey. 
Some never make it.  Just read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help, to hear more about why.  He talks about schizophrenia, which is a thought disorder; bipolar is a mood disorder, and that makes for many differences.  With my son Ben's schizophrenia, there is no moment when his eyes shine with his full personality the way they used to before his illness developed; With bipolar disorder, there is often a precarious period during which the highs seemed tempered by the lows. As I sometimes say to the members of a NAMI Family-to-Family class when I teach about the different illnesses, "at least with bipolar you get to be charming part of the time."  It gets a laugh - a painful laugh. But still.  Hence, Charlie Sheen's wonderful timing in comic performances - and his outlandish hubris on his live tour.

However, there are similarities as well in thought vs. mood disorders. Psychosis is psychosis, and it's hard to diagnose a speeding train.

Britney Spears - remember the shaved head? Recall how her father finally took control and became legal co-conservator? See how well she seems to be doing now? That is so wonderful to see; still, in interviews promoting her latest CD, I see no reference to what really seems like a bout with bipolar disorder.  Is it her family's right to keep this all private? Absolutely. But I can't help but imagine how many young people would be helped if Britney were to talk openly about her struggles, and if she was helped by treatment: medication, family involvement, therapy. So many college students suffer from depression and - more importantly - do not seek help because of shame.

Let's get shame in mental illness out of the closet and kick its butt. Being open about treatment is a great step towards that acceptance.  Wishing Catherine Zeta-Jones and her family lots of love, and the same empathy and applause her husband Michael Douglas got when he publicly dealt with cancer.

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness by Linda  Appleman Shapiro

My rating: 4 of 5 stars

Linda Appleman Shapiro writes honestly and beautifully about her experience as the daughter of a mother with mental illness, coping with  the confusion of the mood swings, her struggle to understand, and the stress and shame of keeping it all a secret. We meet her family members - Linda, her mother and father, and her brother - and soon the dynamic in her Brooklyn home becomes clear - as does the love that prevails.

In addition, we get a nostalgic peek at life in Brighton Beach, Brooklyn, back in the 40's and 50's, when "hanging out at the beach" was a huge part of a young teenager's life. Shapiro has the hindsight, now, of a trained and experienced psychotherapist.  This, combined with her clearly-depicted childhood memories of life in those "Four Rooms" makes for an engaging, enlightening and ultimately therapeutic read.

View all my reviews

His Bright Light: review of Danielle Steel's book

His Bright Light: The Story of Nick Traina by Danielle Steel

My rating: 4 of 5 stars

This is my favorite Danielle Steel book. Yes, it is partly because I share her experience of parenting a child with mental illness (though Nick had childhood-onset bipolar disorder and my Ben has schizophrenia which began to appear gradually in his mid-teens) - but, this common thread aside, I couldn't help but applaud Steel's candor and courage in sharing her experiences with the world.

Her Nick is vibrant, charming, brilliant - and troubled. Steel struggles to understand, especially in the light of all the "experts" who tell her that the illness she suspects simply doesn't exist.This memoir not only lets us into the family experience, it also shines a spotlight on the mental health system, with the flaws and limitations of too little research and too much closed-mindedness.

And, oh boy, are there flaws. From laws that forbid the family to "force" medication on someone who is so clearly helped by it to psychiatrists who are all too quick to "blame the mother", these "flaws" quickly close door after door.

Kudos to Steel for telling her story. There is no fairy-tale ending here. Perhaps that's why she writes so many such endings in her novels.

Mom-to-Mom, and I thank Steel for this book. And my heart goes out to all in her family.

View all my reviews

a preview of awesome DVD on effects on family: The National Alliance on Mental Illness: In Our Own Voice Family Companion

This is a preview of a DVD associated with a research project. The full DVD is meant to be presented in its entirety along with a program, part of a NAMI-CT collaboration with NIMH, the Mount Sinai School of Medicine and the Institute of Living. If anyone would like to see the video with a presentation, Ann Nelson is happy to arrange that for family members or providers. NAMI-CT at 203-927-1541 or familyresearch@namict.org.