Ben Behind His Voices Blog
One Family’s Journey from the Chaos of Schizophrenia to Hope
NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)
Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.
Chris Harper Mercer: A Preventable Tragedy?
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.
As mother to a young man who has been diagnosed, and is (reluctantly but consistently) in treatment for a mental illness (schizophrenia), my heart goes out not only to victims and their families, but also to the family of this latest shooter. His father, Ian Mercer, of Tarzana, California, told KTLA on Thursday night: "I am just as shocked as anybody at what happened today".
Once again, the system closed its eyes to the need for support and left a family alone to cope.
Chris Harper Mercer was also, according to a NY Times article, close to his mother, with whom he lived. She reportedly had asked neighbors to help her get her apartment exterminated for roaches that bothered her son, who was "dealing with some mental issues." How else was she trying to help him? Or, like so many other stigmatized families with a "troubled" relative, did she just hope she could keep the situation quiet and keep things under control?
She obviously could not. Neither could Adam Lanza's mother, Nancy Lanza, in Newtown CT. Once your child is a legal adult, the very few rights you had as a guardian disappear completely. But the problem does not. And tragedy, as we have seen way too many times, can result. Though this kind of violence is NOT the norm for those with mental illness, it is the most publicized result of the neglect of our system toward the 1 in 4 families left to cope with mental illness alone.
When will we ever learn?
When will we pay attention to warning signs?
When will we open our eyes to the need for treatment, and put a system in place to help the families left to "figure it out" themselves?
We are one of those families. For the past four years, Ben has lived with us, because the system failed to realistically help him stay in treatment and rebuild his life. The minute he started to succeed, budget cuts took away services he supposedly "no longer needed." That is like stopping chemotherapy halfway through, with no follow-up.
We are Ben's family and we love him. So much so, that we're willing to let him "hate" us during the two most uncomfortable moments of the day: times to take medication that he does not believe he needs. We stay up late to supervise when he gets home from his job, often between 1 and 3 AM. There are nights when I can barely stay awake, and cannot relax until the meds are safely swallowed and absorbed.
But it's worth it. The stability of consistent treatment has helped Ben to rebuild his life. He has a job, friends, and a car and credit card in his name (!). He is starting to feel like he has a life he's proud of. But he hates those two times a day...and I have no doubt that, were we not there, he would stop treatment immediately. He has his reasons, one of which is he wants to take full credit for his "better decisions" lately. He does NOT want to hear that his good track record "seems to coincide" with times he takes his medications.
He melts down every so often, accuses us of controlling his life, of mistakenly labeling him "insane" (his word, never mine). He then says he wants to stop taking medication -with the best of intentions to keep succeeding, of course - but we have seen, eight times, what happens when treatment stops. It's not pretty. Hallucinations. Withdrawal. Resistance. Mania. Police. Ambulances. Sometimes handcuffs. Hospitals. Work, school, money, friends - all can be lost so quickly . So we let him hate us, twice a day.
Ben has never been violent - for that we are so grateful. He hates guns, and loves people. So, no, I don't fear he would become a shooter. But I do fear for his life, and his future. If we should stop managing his treatment (someday he might simply refuse, or we might be away, and - let's face it- parents do die eventually...) where would he go? How could he function? Would his "case management team" even have an idea what is going on? Would he get in his car and drive in a distracted state?
Every family dealing with mental illness lives on a tightrope, with an anvil suspended overhead ready to fall - because there IS NO SUPPORT.
We cannot close our eyes to the people who live with mental illness. We cannot sell them guns. We cannot deny them treatment - not just medical treatment, but services and support. We cannot play ostrich and "hope things get magically better."
According to a guest commentary, Treatment Advocacy Center, "The number of psychiatric beds in the US has been reduced in the last 50 years from about 650,000 to about 65,000—about equivalent to the number of mentally ill that wound up on the streets or in prison."
Or living with their frightened, hopeful, families. Attention must be paid.
What's the Difference When Your Child's Illness is in the Brain? "Sympathy"
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.
Deeds: “The system failed my son”
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.
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: http://www.cbsnews.com/videos/nowhere-to-go-mentally-ill-youth-in-crisis
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.
January First Review: Yes, Childhood Schizophrenia is Real
January First: A Child's Descent into Madness and Her Father's Struggle to Save Her
by Michael Schofield
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.
Bravo!
Randye Kaye, author "Ben Behind His Voices"View all my reviews
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!
PBS AZ Opening Question: "Who is Ben?"
The interview for PBS in Phoenix, AZ last Thursday began with this wide-open question:
Who is Ben?
How to answer? Well -
different trees, same mental health issues
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)andASU'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.
Diagnosis, Schizophrenia: What Came Next?
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!"
Connecticut Style, WTNH: Interview with Jocelyn Maminta
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.
Sharing the Message: Interviews, Reactions, Reviews
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:
Oakland County Moms Interview,
Touching lives, opening eyes...hopes for the book
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."
" I couldn't put your book down because I could relate to your stories and all the stages of acceptance that you went through and are continuing to go through."
Thanks to all for taking the time to write, and comment.
Another theme is developing as well, as I read your comments -- many who have been educated in the fields of psychology are telling me that it has really opened their eyes to early symptoms of mental illness - and that (shock, to me!) there was no requirement to study these signs as part of their curriculim. I have been told by fellow author Susan Inman (After Her Brain Broke) that this is often true in Canada -but I always assumed that here in the U.S. our providers were adequately educated about mental illness.
If you are a therapist, school psychologist, social worker, etc - were you taught about these illnesses? Were you educated as to early symptoms to faciliate early detection, and to help families participate in treatment?
If you are a teacher, professor or college administrator, are courses in the major mental illnesses part of the curriculum in these fields? Why or why not?
Just asking.
Listen to a Scene: Ben Behind His Voices
One week before Ben's first hospitalization in 2003, I stopped by his apartment because he wasn't answering my calls. This is what I found, from the chapter "Not Sick Enough." Ben's silent treatment, and his living conditions, were almost grounds for the Emergency Room- but not quite. Not yet.
insight?
So yesterday Ben was visiting for the weekend (we went to see two outdoor theatre productions, which he loves - and I think he followed the plot of Much Ado About Nothing better than my fiance and I did...), and he told me that he'd been talking to another person who lives in supported housing with med supervision, etc. He said - and I quote - "He's diagnosed with schizophrenia, too." - WHOA! Milestone. Ben seldom acknowledges his diagnosis, and I"ve learned not to bring it up.
I simply said something like, "Oh- that's interesting", but inside I was heartened. One more baby step. If I don't push, if I let the journey be his journey, if I keep the right combination of letting go and encouraging progress, hope lives.
This morning there is an article in the paper from the AP, "Scientists try to stop schizophrenia in its tracks". Schizophrenia's prodrome - validation for need of early detection. http://news.yahoo.com/s/ap/20090726/ap_on_he_me/us_med_stopping_schizophrenia
