Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to “handle it” alone. Duh, again. Been there – am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment. Continue reading Chris Harper Mercer: A Preventable Tragedy?
60 minutes recently did a segment on the plight of families dealing with mental illness. They interviewed many families and healthcare professionals in Connecticut, on how our system fails our Mentally Ill Youth in Crisis.
Virginia State Senator Creigh Deeds speaks out about how he was attacked by his son Gus, who suffered with schizophrenia. Virginia state senator Creigh Deeds suffered multiple stab wounds, and his 24-year-old son Gus died from an apparent self-inflicted gunshot in what police are considering an attempted murder-suicide.
Read more: Virginia State Senator Creigh Deeds’ Son Evaluated and Released Before Stabbing | TIME.com http://nation.time.com/2013/11/19/before-senators-stabbing-a-shortage-of-psychiatric-beds/#ixzz2rzmupJD6
Connecticut families, in the continued aftermath of the Newtown shootings, still face the same issues of lack of beds, a revolving-door mental health system, and lack of support and help.
How I wish they had interviewed me, too – but the stories of Deeds and the other families are heartbreakingly similar. Sadly, the story in my book is not unique. Many suffer the same issues we do, every day, without support or even understanding.
In the “overtime” segment about stigma, a group of families shares the effect of stigma on their experience, and how a broken leg can bring casseroles, while a mental illness can bring warning letters from the lawyers of your neighbors.
What’s the difference, according to one of the parents interviewed? “Sympathy.”
Watch the clip here:
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.
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.
My rating: 5 of 5 stars
It’s such a mirror reflection of the emotions I went through as the mother of a son with schizophrenia – only my child was in his mid-teens when symptoms began. Jani was only – well, in hindsight for this loving, confused family, she was a newborn when her “differences” became apparent.
But, like our family, the Schofields thought, and hoped, that love – and disciplined, creative parenting – might just “fix” the problem. Not the case if your child has schizophrenia, trust me – and not easy to accept for either parent.
This is a highly readable, honest, raw memoir of the grasping at the straws of hope that we go through to find our how we can help our children. And, eventually, that we can’t do it alone. Then, we have to find the right people to fill out the team. This, as you’ll read, is a long journey.
Many had thought “childhood-onset schizophrenia” was not a real thing. It is. Oh, it is. And this family, like ours, has worked tirelessly to get through the maze, guided by love and hope.
Randye Kaye, author “Ben Behind His Voices”
Quick Updates: (1,2,3…)
1. Ben Behind His Voices Comes to New York City!
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 Ave
Glen Oaks, NY 11104
reserve your (free) seat at firstname.lastname@example.org
(Venture House is a clubhouse program
located 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
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!
The interview for PBS in Phoenix, AZ last Thursday began with this wide-open question:
Who is Ben?
How to answer? Well –
He’s my son.
He is a sweet, loving, bright, caring, 29-year-old.
And – he has paranoid schizophrenia.
Very importantly, he is being treated for schizophrenia.
Here’s how I answered this question, and the thought-provoking ones that followed, in this PBS interview on Arizona Horizon with Ted Simons.
In the same state where Jared Lee Loughner just lost his third appeal over forced medications, this is a very important distinction. My son, Ben, is in treatment. Loughner, who killed six people and wounded former U.S. Rep. Gabrielle Giffords and 12 others in nearby Tucson just over a year ago, did so as a person whose schizophrenia had gone untreated for too long – and with disastrous results.
Here, in the state of Arizona where many still seem in a state of emotional disbelief over what happened in Tucson, the consequences of inadequate care and services for those suffering with mental illness seems even more obvious – and undeniably important.
In three days, I have made the rounds, courtesy of the Arizona Foundation for Behavioral Health (AFBH) and ASU’s Center for Applied Behavioral Health Policy, speaking in a community lecture, two media interviews, and meetings with NAMI as well as university students and educators in the field.
It has been a whirlwind – and I have met so many wonderful people who care about the issues that can make a difference for all of us affected by mental illness: people who have been diagnosed, those who love them, and the community they live in.
I have but one story to tell with full accuracy – our own – but I have heard many more in these few days. I hold tight to the belief that, one story at a time, shared without shame and empowered by education and courage, we can all make a difference in the way services for those with mental illness are funded, and to the laws that need to be passed to increase research, provide resources, and restore dignity and health to those who have been let down by the system that used to help them live a useful, dignified life.
Interview on Conn Jackson’ show, Get Connected— he on windy Manhattan (California) Beach, me in a nice warm studio in Manhattan (Big Apple). He asked some great questions, and allowed me to highlight the importance of therapeutic alliance, NAMI, early detection, reduction of stigma, support and education for families, and the importance of love and hope.
Thanks, Conn! Here’s what he had to say about the interview on YouTube:
“Watch as Randye Kaye, author, tells us about her son’s struggle with schizophrenia and how she helped him though it. Why is Randye’s secret advice? Watch and find out!”
Jocelyn Maminta is a wonderful journalist and talk-show host – and our paths have crossed many times throughout the years. During my years as a radio personality, speaker and now author, we often appeared together at local events, and I’ve had the privilege of hearing about her personal inspiring project, Caroline’s Room. She is a skilled newswoman, warm and genuine person, and a fellow working Mom.
Today Jocelyn interviewed me for WTNH’s daytime show, Connecticut Style. Thanks to all involved for the chance to share our story and increase awareness of Ben Behind His Voices, as well as the reality and hope it contains.
I had the pleasure of being interviewed on WBAI in New York by Armand DiMele, for his popular broadcast “The Positive Mind” . The show aired on August 23, 2011, but you can listen to the archived show here:
If you’d like to read more about Ben Behind His Voices, I’ve had the pleasure of being interviewed by several writers recently. Here are a few links:
About four weeks until the actual book release, and yet the most amazing gifts have been coming my way in the form of e-mails, on-line reviews, and blog comments from those who have already read it, via pre-order. These reactions warm my heart, and bring tears to my eyes – because they resonate so much with the reasons I felt the story had to be told.
Meanwhile, my Ben has actually asked to hear a bit from the book. First time ever. I think he is starting to accept that it can be of help to others. The road to this acceptance is his journey to take, at his speed. Locally, some people have slipped on occasion and called him “Ben” – which is not his real name – and he laughed about it. Whew. Trying to honor his privacy, and also keep the door open. He did give me permission to write this memoir, as long as it was clearly from my perspective (which it is) – but I’m still releived to see that he still seems supportive of it, even now that it is real: a book you can hold in your hands.
Among the comments:
“It truly is extraordinary. Your writing style is fresh, captivating and riveting. Your vulnerability is inspiring and wonderfully raw. As
someone who has been immersed professionally and personally in the world of mental illness, thank you.”
“I find your book a miracle of persistence, strength and love. It is a great book, in particular, I think, to give a view of what parents go through.”
“I just finished reading this book for a review…. I just wanted to say that I am both incredibly overwhelmed and in awe of your strength and your family’s. I fell in love with Ben through the story; felt the sorrow, the fear, the pain, the anger… I am so blessedly thankful I get to have a chance to share this story with all of our readers.” Continue reading Touching lives, opening eyes…hopes for the book