Beyond Hidden Valley Road: Is There Now More Hope for Schizophrenia?

What a panel! I got to interview 3 schizophrenia experts at once :

Robert Kolker, #1 NYTimes Best-selling author of Hidden Valley Road - also one of the rare non-fiction Oprah book Club selections

Miriam Feldman, author of He Came in with It, publication date July 21

and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.

We cover, among other things:

What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma - is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family ...and more.

Partnering with Researchers for Brain Awareness Week 2018

"This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness."

You can view the story here!

What if Target's Sweater Poked "Fun" at Cancer?

What if it said “Christmas cancer. My spending is growing uncontrollably”?

Is really "just a shirt"?

This week, social media has been abuzz with two "holiday" issues so far: the Starbucks Cup ( and there's not much left to say) and a sweater still being sold by Target which amusingly ( to their buyers, I suppose) calls O.C.D. "Obsessive Christmas Disorder.

"Mental Health Advocates are up in arms about this "joke", which not only trivializes a serious and sometimes debilitating condition, but in doing so spreads misunderstanding and stigma. Target is refusing to remove the sweater from its racks, and its supporters say "oh, get a life, it's just a harmless joke."

But what if the sweater read:

 I have Christmas

Cancer.

My spending just keeps growing out of control.

I ask you, what then? Would anyone be supporting Target's "right to make a joke"?

I have a sense of humor. My son has schizophrenia, another serious mental illness, and after years we can finally laugh together about parts of his past. But the key word is: together. We laugh with, not at. 

OCD is not "cute." It's not Monk wanting to keep his shoes in a row and the carpet clean.  Some are able to manage the symptoms, but many are not, and this illness prevents them from living a productive life. For those who struggle to manage this, or any other serious illness, it's not a laughing matter - unless you have earned the right to laugh with, not at, perhaps struggling with the illness yourself - and then only if the time is right.

No one needs a healthy person wearing a sweater that trivializes the condition of someone who is not.

I recently went through a year of physical therapy to regain the ability to walk, and laughter has helped...but not laughing AT. Only in the physical therapy room, or with my family and friends who have helped me through, was humor appropriate - and actually quite welcome. But if anyone were to make fun of me, or wear a shirt that said "I am crippled for Christmas: My credit card has limitations", I would be annoyed at the trivialization of my pain.

laughing at oneself is very different from laughing at someone else.

Mental illness is still a physical illness; it's in the brain. If you wouldn't make fun of cancer, Target, don't make fun of OCD, schizophrenia, PTSD, bipolar, or any other illness of the brain.

Pull those sweaters now.

Sons with Schizophrenia: A Tale of Three Mothers

Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.

But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.

Love matters…but it’s not enough

My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.

And it is far from easy.

Laura Pogliano called herself “lucky”, too, sharing her story The Fortunate Mother: Caring for a Son with Schizophrenia in USA Today in 2014. In it, she “feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge…even though ‘Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.' “ 

Later, she struggled with whether or not to let Zac get his own apartment.  In a USA Today follow-up story, Laura says Zac had moved into an apartment near her home, and that she had tried to “protect her son without being overprotective.” Zac stopped communicating with her for a few days, and she had the same reaction as many parents who strive to allow independence with limits: “I asked myself, 'How much do I baby him? If he's with some friends, I don't want to butt in.' ''

Who hasn’t been there? I know I have. That balance between letting go and stepping in is a staple of parenting. In Laura’s case, the results were tragic: Zac was found dead in his apartment in January 2015. Her “luck” had run out…but the lack of respect and services for her family situation is certainly more to blame than luck.

Laura is devoting much of her time now to honoring Zac’s life with her advocacy. This did not have to happen. See her powerful piece called My Mentally Ill Son versus Your Son With Another Type of Illness.

Young Holmes Family

Holmes Family Today

Arlene Holmes is the mother of a man who is hated by many. Her son, “Jim” is known to us for only one thing : the day he opened fire in a crowded movie theater in Aurora, Colorado, killing 12 and wounding 70. James Eagan Holmes, before that day, was a neuroscience student, a camp counselor, a church goer, a class leader, a big brother. He was – and is – somebody’s son. And he had needed help for a long time.I don’t profess to understand how Arlene Holmes feels. I can only imagine the guilt, regret, isolation and grief – and surmise that these feelings began long before the “Batman incident”, when her son first began to show early behavior changes (including a suicide attempt at age 11). What I imagine to be the feelings behind the stoic expression of Arlene and her husband as they sit near their son during his trial comes from her self-published book of poetry When the Focus Shifts, her reaction to the shootings, and the arrest and trial of her son. She states that the proceeds are to be donated to medical and mental health services.

Is she a “monster”, who “raised a monster”? I doubt it. I suspect that she, like me and Laura, was just a woefully underprepared and unsupported parent.

She writes:

(01-08-2013) I can never forgive myself for not knowing that this would happen.

How could I have known?...

Forgive yourself…And then forgive the people who hate your guts and want you dead.

(02-01-2013) I had a good kid who never harmed anyone.

That changed; his brain changed.

(03-22-2013)

A memory of when he was in high school…we are hiking up a hill

I can’t keep up.

Jim stays behind to make sure I am okay.

Isn’t that empathy?

Arlene writes about sitting in Jim’s untouched childhood room, “because I need the memories and tangible evidence that he was a good person.” Could this have been me? Could it have been Laura?  Three mothers – three sons with schizophrenia.

What made the difference?

Is it love? I highly doubt it. These boys were all loved.

Is it the lack of family education and support? Shortage of attention paid to early diagnosis and treatment? Is it the fear of diagnosis, fed by stigma, fear, and paucity of realistic access to treatment that must be consistent to be effective? Answer: sadly, all of the above.

Or is it also just the randomness of things, the moments we missed when we look back and say, “I wish I had known?” To this I say: you can never know. You can guess. You can educate yourself. You can take whatever actions seem right, do what the mental health system “allows” you to do. But nothing is ever that clear where mental illness is concerned.

“Show me a prison, show me a jail
Show me a prisoner, man, whose face is growin' pale
And I'll show you a young man with many reasons why
And there but for fortune, may go you or I”
- Phil Ochs

Is it fortune? Really? According to a 2006 study, “An estimated 56 percent of state prisoners, 45 percent of federal prisoners, and 64 percent of jail inmates have a mental health problem.” So can we also blame a mental health system that is underfunded, shortsighted, and mired in legalities that prevent people with mental illness – and their concerned families - from getting the help they need?

I’m talking with George, a social worker who works in the prison system, about this. He says that, yes, many of his prison clients have schizophrenia. We agree that so many of those with unmanaged mental illness wind up instead either homeless or in prison, and that they’d have been better served by receiving treatment, as early and consistently as possible – but then George shocks me with his next statement. He says:

Of course, the majority of my guys are imprisoned for killing their parents.

This stops me in my tracks, knocks me right off my soapbox. There but for fortune…?I have often imagined how hard it would be if Ben were incarcerated (which almost happened), institutionalized (which also almost happened), or homeless (which did happen, in the past) – but the thought that he could kill us, or anyone, in the midst of psychosis has never crossed my mind. Ben is a gentle and sweet soul – has been since birth – and I’ve always felt that this has been our saving grace. But did Arlene Holmes think her son incapable of violence? Did Laura Pogliano think she was through the worst of it when Zac admitted he had schizophrenia and agreed to be interviewed by USA Today?

The truth is, I have no idea what Ben’s voices tell him when he is untreated . He has never admitted to even hearing voices, much less the words he hears, but if he stops taking medication the fact that he responds to this internal world is undeniably clear. We only hear and see Ben’s side of the “conversation” – he gestures, grimaces, talks – but what do the voices say to him? I hope we never know, We’ve made it our job to make sure he stays in treatment, keeping that internal world quiet enough so Ben can work, live and love in the external world. We have no “legal” right to do this, of course; it’s simply a house rule, and Ben follows it. We have set limits in our home and we enforce them. So far, so good.

These days, Ben has a job he excels at, a social life with friends and family, and interests like hiking, bowling, and college classes. He takes his medication twice daily, which we supervise. Not my favorite moments in the day, but worth it. Every day he asks for a “Mom hug”, and tells me he loves me. Lucky family. We know it. But we live life with crossed fingers. All we can do is our best to make sure we respect his illness enough to keep it managed.  And the rest…is out of our hands.

There but for fortune….and one hell of a continuous fight. For treatment, for research, for respect for the needs of those with mental illness, the right to have treatment and the right to a future.

Three mothers.

Three stories.

Three outcomes.

Countless other families that could have been saved – including those of who have lost loved ones – with early diagnosis, stigma-free treatment, understanding, better research, mental health support services.

When will we ever learn?

One Reader Speaks: Siblings, Schizophrenia, Support, Strength

Thanks for Reading and Sharing

Sometimes I open an e-mail from a reader that not only touches me, but teaches me...and these words, from the sibling of a man with schizophrenia, are in my heart forever. The author has granted permission to reprint his words here, for which I am so grateful - and hope you will feel the same way. I have changed the first names, and added some links, but otherwise this is, verbatim, what has re-inspired me today to continue to seek, and see, the strength courage and beauty in my son Ben. Thank you.

Dear Randye,
I am writing to thank you for your strong and beautiful book Ben Behind His Voices.  I did not want to read it.  I borrowed it from a friend almost two years ago and have been walking past it since then.  And I can’t exactly say it was light reading once I cracked it open.  Ben’s story is so much like my brother John’s.  But, with John now 54 and myself 58, it was high time to rewalk the path and get some new perspective.  I simply cannot thank you enough for your clear and detailed depiction of your family’s journey.

You do an especially fine job of explaining that tension between trying to help and trying to let be.  Also, you truly help readers understand that realization that for a person with schizophrenia, life dreams and plans will need to undergo revision.  As Robert Frost’s poem “The Ovenbird” reminds us, the question that needs continually to be asked, about all our lives, is, “What to make of a diminished thing?”  One could view the question as pessimistic, but to ask it honestly is actually an exercise in wisdom and courage.

Even though John cannot “compete” for standard definitions of success, he puts most of us to shame in a few specific areas.  One is courage.  A few Aprils ago I remarked to him on the phone what a gorgeous spring day it had been.  He said yes, that he had been out too.  He said that he had forced himself to let the bus home go on without him so he could sit out on a bench until the next bus came.  “It was hard,” he said, “but I did it.”  It was hard?  To sit on a bench for 30 minutes on a beautiful spring day?  It’s a reminder that, for John, facing the world most days takes the courage of a first responder running into a burning building.  But as you so clearly point out, his heroism is not the type to garner honor, gratitude, or even acceptance.

Yet I could speak of HIS acceptance of others, his sensitivity to those who are suffering, his spontaneous generosity.

We talk on the phone a couple times a week.   He lives about 90 minutes from me.  Yesterday we spoke for about 20 minutes.  With your words so fresh in my mind, I was somehow able to enjoy the conversation more deeply.  It was one of those moments you talk about that should be cherished for the simple pleasure that it is.  Your book did that for me.

I am saying a prayer for Ben.

I love hearing from you, dear readers. Thank you for your e-mails, your comments, and your advocacy - RK

On Glee, Odd Behavior, and - Schizophrenia?

Today's post comes courtesy of Ben Behind His Voices reader - and fellow Mom and blogger - Kari Larson. She wrote to me about a recent episode of Glee that I had also watched....and noticed Sue Sylvester's line of dialogue that compares character Blaine's new interest (talking with puppets) to that of someone "with schizophrenia and off meds"

I had noticed it, but it didn't really hit me as insulting because...well, hey, this is Glee, where they exaggerate pretty much everything and nothing is really off limits. Everyone acts erratically on Glee, and eventually they usually redeem themselves with some lesson following the farce.

But my son Ben doesn't watch Glee, so he had no reaction to the episode. Kari, however, wrote about a different experience. 

Hi Randye,

My daughter is 17 and has schizophrenia. She and I have watched Glee since the very beginning and overall it's been a show that embraces all types of people.

The most recent episodes have really upset us, and I'm wondering if some of the dialogue has come to your attention.

In one episode, the character of Marley is complaining about her ex-boyfriend's erratic behavior, that he's nice one minute and horrible the next, and says it's so "schizo."

This not only upset me because it was said in a negative way, but because it's not even correct, further perpetuating the myth that schizophrenia entails a split personality disorder. Untrue.

Another episode -- quite possibly the very next one -- has Sue Sylvester complaining that she didn't want school board members coming to the school and seeing "schizophrenia" students talking to imaginary puppets (one character had a hand puppet).

My daughter is heartbroken. I've sent Twitter comments to Ryan Murphy (Glee creator), Glee on Fox (official Glee Twitter account) and one of the executive producers. I don't expect to hear anything back, but I was wondering if any of this has come across your radar.

Thank you,
Kari Larson

In her blog(http://ninepillsaday.com/) , Kari adds: "I’m annoyed by two things. One: Schizophrenia DOES NOT MEAN split personalities. Two: Please, unless you, the writers of Glee, are headed toward a fantastic teaching moment, STOP USING THAT WORD. Stop using any form of that word. It’s insulting and, more often than not, used incorrectly."

What do you think? Glee "just joking" in the way it does for many issues, or stigma to to be protested? Does Sue Sylvester owe us an apology in a future episode? 

Why Be Open About Schizophrenia?

Let's talk about the question I get quite often, via reader e-mails, keynote Q & A, or sometimes in the form of a critical tweet or two accusing me of "exploiting" my son Ben by being open about out family's experience with his illness: schizophrenia.

Am I  "Exploiting" my Son by Sharing Our Family Experience with Mental Illness?

No. Because Ben has graciously allowed me to speak.

First of all,  Ben has given me permission to share our story, as long as I changed his first name, relay any messages he asks me to, but respect his privacy by not using adult photos or expecting him to go on the speaking circuit with me.  These things, I have gladly done.

While not willing to talk about schizophrenia (or even, frankly, agree that the diagnosis is correct), Ben does realize that by speaking (from my point of view as parent), we may be helping other families to cope, understand, and sometimes  come back together.  So this is something we have done, together, each in our own way.

Why be open about mental illness?

To reduce stigma by increasing understanding.

This video, produced for the "Stand Up for Mental Health" campaign at Healthy Place, explains how "through stories, we get the human face of any condition" and "fight for:

• Respect

• Advocacy, and

• Equality"

Please share, and check out the other videos there, if you know someone who may need to feel less alone.

The Mental Illness Family Experience:More Reader Stories

Letters, we get letters....and each time it reinforces the fact that mental illness affects the whole family - and that many - too many - families are left to guess at proper treatment and cope alone, especially if their family member is a "legal adult."

at a recent NAMI conference, I spoke about the truth that underneath every "patient" is a valued person: (this link goes to a short youtube excerpt) 

The Courage and Love of Families Dealing with Mental Illness

from a couple in Massachusetts:

I just finished reading your book and I say thank you. Our family has been on this journey for 12 years with our daughter. My wife and I read your story, cried, wiped tears and started again, shared in your triumphs and your challenges, laughed, recalled frantic moments, and on. We are members of NAMI, the F2F course many years ago saved us from bottoming out. We still fight every day for society to support this brain illness. I will hold onto your visions of Pride, Hope, and eternal love for your family. Thank you for speaking out and sharing your family with us.

from Laura in California:

First I would like to thank you for writing this awesome book. I have bought a few copies and am having extended family read it to help understand what our family is going thru. I am writing you because our son who is now almost 24 is diagnosed with schizophrenia...the real problem is at this age we want him to live independently from us. I am worried if anything were to happen to us he would be lost...Thank you so much again for writing this very important book.

from another Mom:

My husband and I both read your book Ben Behind his voices in four days we couldn't put it down you were telling my story with my son.I have both my sons mentally ill.
I have so many question I want to do what you did and help them get their lives back.
My older son unfortunately became violent I called the police one time ... he spent 4 months in jail/ Psychiatry, then he became homeless because he wouldn't go by the house rules and seeing a psychiatrist - let alone taking meds.
Both my sons had a breakdown in their sophomore year in college.
I would like to get my son off the street and get him help.Please help. I am also a member of NAMI.Thank you for the book you are a wonderful mother. 

As you can see, the story in Ben Behind His Voices is not unique. Families are to often left to cope alone, and I am thrilled that we are, at least, beginning to reach out to each other. I'm honored our book is a part of that, but without you, wonderful reader, the story will only go so far. Thank you for commenting, connecting, sharing, recommending. I can't help but think that, even though the "newtown shooter" has not yet been proven to have had a mental illness, the situation would have very very different if his family had had education and support.

Ben Behind His Voices: One Year Into a Book's Life

Hard to believe that the book launch party for Ben Behind His Voices was over a year ago now. The "new book smell" is gone. How are we doing?

Perhaps writing a book is like being pregnant: you're changing your life, making plans, working hard - yet have no real idea of what is coming into your life. Publication is like giving birth, perhaps - ah, here it is!, maybe the hard part is over.

Tend the Garden of Success Each Day

If that is true, then launching your book out in to the world is like raising a child. You have to work at it, every day - and, even so, there's much that is not truly in your control. You do your best, you try things from every angle, and then you hope that child will grow well, and touch the lives it/he/she is meant to touch.  Keeping book interest high is a garden authors must tend every day - and, like a garden, the seasons are ever-changing.

So - here we are, one year in - and the biggest discovery for me, I think, is that people are still discovering the book.  Unlike a flavor-of-the-month flashy new novel, the memoir seems to be more of a turtle than a hare - and that's just fine with me.

Sure, no Oprah appearance yet. Was booked onto Dr. Drew, but bumped by Hurricane Isaac updates. Ah, show biz.... Still working toward that "magical National appearance", perhaps - but there has quite a lot of press on the local, state, and Public Broadcast level. And, the book is young, and so far very well-received, both by reviewers and by readers who reach out to me.  So I don't think the chance is gone. At least, I hope not.

My publisher, who has had to move on to the new releases, seems to have noticed that book sales are growing instead of fading, as I got a note from my editor: "It’s great the book is still garnering interest.  Usually things really trail off after the first year."

Not if I can help it! Not when I'm still receiving letters from readers like this one:

Your book has been so very helpful to me. I am not done reading it yet, but so far this book mirrors my son's symptoms that I have been explaining away.

Thank you for sharing your experiences with me. Without ever knowing you, I feel very connected to you and your son. Thank you for helping me along my journey.

So, when my editor adds, "Great job!  I wish all my authors were as into it and on top of it as you.  I wish they would get the message that this stuff can help drive sales and recognition." - what does she mean?

Sure, book readings at Barnes and Noble are done - that's so last year. But there's a lot that still works. Mostly it's about finding new reasons to share the story - and there are so many things to fight for, to increase awareness of, in the world of mental health. So the work now is in topics, in the platform:

Keynote at Univ. Mount Union

• Increase respect

• Shift perspective from stigma to stability

• encourage therapeutic alliance for recovery

• see potential and strength

• care for the caregiver

• educate families so they can be allies,

• advocate for services from housing to supported employment and education,

• hear the many voices of people living with mental illness - and their families....

...and on. Hence the speaking topics I offer, and the gratitude for the places I've been invited to deliver them.

The book may be a year old, but the topic is timeless. Where to open the conversations? Everywhere.  This week it was a keynote called "From Stigma to Stability - Changing Minds about Mental Illness"  at a local Rotary Club. This weekend it's a presentation at the US Psych Congress in San Diego,. then a keynote atNAMI NYS conference.  Also getting involved in advocacy with the ICCD (Clubhouses for mentally ill members) to talk about how helping someone with mental illness helps the family too...Hospitals, Universities, Medical Schools, Nursing Programs...and then there is twitter, facebook, my blogs here and at HealthyPlace.com...

Remember - one in four families deals with mental illness in a loved one. That's a lot of folks who need to hear they are not alone.

Year two, here we go! and thanks for your support so far.  I hope you'll continue to share, tell others about this memoir and the work it is inspiring. There's so much still to be done.

And if you happen to know Oprah, well.....that'd be awesome too.

Unemployment: Rocking the Recovery Boat

Well, it has happened:  Ben has been laid off from his job.  When I picked him up yesterday, he had just emerged from the "meeting" some of us know all too well. We love you. We think you are awesome. We just have to lay off some people because of the season, and unfortunately you are one of them.

Oh, Ben put on a brave face.  He immediately told me the "good news" that the layoff had nothing to do with him, that they will give him a great recommendation...but I could see it. He hasn't genuinely smiled since he got the news yesterday.

And that hurts. For both of us.

employment supports recovery

This job had been Ben's first since his 2003 hospitalizations - and for 18 months he has been proud to have an answer when someone asks, "and what do you do?"  Even though he is also a college student, after a year and a half of also defining himself as a person with a job, it won't feel like enough to be in school.

This unemployment blow is painful for anyone - I know, and maybe you do too. Still, even with the current economy, a number of us will feel fairly confident we will be hired again, somewhere, to do something.

But we don't have to worry about whether we should disclose a history of mental illness, of several hospital stays in our past.

Ben's current (soon-to-be-previous) employer had been great about that. Even after a relapse in 2011, Ben had been welcomed back to work - and relieved that the "secret" was out, and hadn't made a difference. I blogged and spoke publicly about this wonderful employer - for, by accepting Ben's diagnosis and respecting his strengths, they not only gave him back an important part of his self-esteem; they also got, for themselves, a reliable, trained, enthusiastic employee and team member who always showed up, on time, and worked hard.

Let's hope (and, yeas, pray, why not?) that this particular history can repeat itself. Ben needs a new job. When he gets it, we'll look back and see this had been a mere glitch.

But, right now, it feels like a huge weight. Uncertainty can do that - and stigma is suddenly springing anew after having spared us for a time. And we need to be patient, optimistic, and hopeful.  Maybe Ben  can land a job on his own - maybe he'll need supported employment, a job coach, volunteer work. He - and we - will do everything we can.

I want to see the light come back into Ben's eyes.  Hire him - he's worth it.

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!

Depression out of the Closet: The Boss too

Add Bruce Springsteen to the list of celebrities willing to talk about their mental issues.

Springsteen talks about his lifelong battles with depression in a 16,000-word New Yorker profile hitting the stands this week.

Every time someone in the public eye is willing to talk about mental illness, the door opens to acceptance just a bit more, and stigma is dealt a blow.

Ben and I are trying to do the same thing with our  book. This week I was thrilled to present "Listen Up! Hearing the Family’s Perspective on Illness " as Interdisciplinary Grand Rounds at Bridgeport Hospital, and honored to receive this feedback:

"I truly appreciated your candor, your humor, and your heart in speaking on this topic. I'd like to think I pride myself on empathy and compassion with all my patients, but I know after hearing you speak, I will double my efforts, all around, no matter the condition.  Thanks again for a really worth while and inspiring talk."

To touch another person like that - well, that's the reason I wrote the book and speak out. Thank you.

Yes, right now it is mostly my crusade as Ben's Mom - but someday I hope that Ben will speak out too. I see signs of acceptance in him, but I know he is not ready to say, in public, that he has schizophrenia. That's okay. I will take what we've got, and I know what it takes. Patience. Understanding. Love. And some luck too.

Meanwhile - Thanks, Boss, for your courage and honesty.  You've kicked the door open another inch.

Schizophrenia and "Perception": Will it be Accurate?

Tonight TNT unveils a new series called “Perception” , in which Eric McCormack plays a brilliant neuroscientist with a full-blown case of schizophrenia.

According to the NY Times, here is the premise:

Colorful characters that only Pierce can see pop up to help him solve murder cases he consults on for his spunky F.B.I. buddy, played by Rachael Leigh Cook. These apparitions badger Pierce with what appear to be non sequiturs and useless information until the last 10 minutes of an episode, when the light bulb goes on, and the murderer is identified.

"Perception" and Mental Illness Stigma

Eric McCormack plays a neuroscientist in “Perception” on TNT. - JanThijs/TNT

The review goes on to say that this is "TV-Fantasy schizophrenia" - so what does that mean? The hallucinations are useful? Cute? Just a manageable feature of a slightly-eccentric personality?

Will the fictional Daniel Pierce take meds? Will he have had any hospitalizations in his past? Does his family stick with him? Does he have friends? Is he stigmatized at all by his illness?

Will this show help spread misconceptions about schizophrenia as a cute illness, handy for solving crimes, rather than an acute illness?

We will have to wait and see. I'm taping it tonight. I've suggested to Ben that he watch it too, but I can see that the idea made him uncomfortable. So that, too, will have to wait.

Book Tour Continues: Trains, Planes, Automobiles

Catching a train to Boston today, then a drive to Marlborough, Massachusetts to participate in the Parent / Professional Advocacy League (PPAL) 2nd Annual Conference & Celebration as keynote speaker, then a car to Logan Intl airport and a plane to Los Angeles for a US Psych Congress regional event. Presenting about partnering for best recovery outcomes in mental illness by sharing our story as told in the book - and in the year since its publication.

After a book-signing, it's back on the plane home to Ben and the rest of the family. After one day together, I drive back to the Boston area to speak with pharmaceutical reps about how more medication options can keep hope alive. Then home, then back to the airport Wednesday - this time to Seattle, to present with Susan Inman, author of After Her Brain Broke, at the NAMI National Convention.

So many are working so hard to increase understanding, reduce stigma, foster respect, advocate for the right to mental illness treatment and better research in the field.  I am so grateful for the opportunities to be one of them. And grateful that the rest of my family is here for Ben, as I travel to hopefully inspire others to become part of recovery in any way they can.

Stop Stigma Now!: It May Save a Life

Last night I had the pleasure of being the keynote speaker for the Kennedy Center Inc Annual meeting. The theme was inspiring:

Create Hope, Celebrate Potential.

The Kennedy Center staff does so much to do just that, from educational programs to support services like job coaching, to residential programs and more, helping families when hopes and dreams have to be adjusted due to a disability diagnosis - in utero, at birth, because of an accident, or (as in our case) as a child develops.

Decorated books! for the centerpieces

We cry our tears; then, if we're lucky and well-guided, we wipe our eyes, pick up the pieces, educate ourselves, find a new community, get some support and new knowledge, and learn to understand our "new normal."  Then we adjust. And accept. And, eventually, appreciate the joys in this "new normal."

None of this happens overnight. It takes time (and the "SEARCH" elements I talk about - support, education, acceptance, resilience, communication, and hope/humor) to get to that new place.

And it takes time and patience.

But none of this - none of it - can happen without first addressing the problem of stigma. Especially where mental illness is concerned - because we can't always bring ourselves to see it, visually or emotionally.

Kenton Robinson of the Eastern Regional Mental Health Board wrote a beautiful, heartfelt piece about his experience with family stigma that almost had tragic results for one of his former 7th grade students:

he says:

Depression, bipolar disorder and schizophrenia are illnesses, just as diabetes or heart disease are illnesses, but they are still viewed by many as the victims' fault. That stigma makes people ashamed and afraid, and it prevents many from getting the treatment they need.

I responded:

Shame was part of our initial reaction until we learned better, through NAMI (I became a family-to-family educator and trainer) and through hearing stories of others. I wrote our book hoping it might save a family as ours was saved - and, possibly, save a life.

Thank you for a wonderful article!

CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

COME AND CELEBRATE! I am thrilled to be one of the speakers at this event, but the real stars are the young adults touched by mental illness, and their art and writings. After that, I will meet and speak with member of Families Anonymous in Connecticut. Sharing is healing.

VOICES ART EXHIBIT SEEKS TO RAISE AWARENESS AND CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

The National Alliance on Mental Illnesses of Connecticut (NAMI-CT) and Young Audiences of Connecticut/An Affiliate of VSA join hands to raise awareness and reduce the stigma associated with childhood onset mental illness through the art exhibit, Voices: The Art of Children, Adolescents and Young Adults Touched by Mental Illness. The exhibit features the work of more than 30 artists between the ages of 8-21, all of whom are either living with or are a family member of a young person living with a mental illness. The Voices exhibit will provide these courageous individuals a venue in which to express their feelings and a window into which others can gain access to their personal lived experience. Several of the youth will be present beside their artwork to share their story of how the illness has been a challenge, as well as an opportunity for personal growth and increased self-understanding.

The exhibit will take place from April 2-13th at the Legislative Office Building, 300 Capital Avenue in Hartford between the hours of 9 a.m.-5 p.m. Monday-Friday.

The Artist Reception will be held on Tuesday evening, April 3rd from 5-7 p.m. and will feature several speakers including Randye Kaye- actress and author of the book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope and Deborah Mendoza and Jana Pietrzyk- two Voices artists and inspiring advocates.

For additional information on either the Voices exhibit or reception, please contact Ann Nelson, NAMI-CT, at either 203-927-1541 or familyresearch@namict.org.

"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…

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.

Courage to Speak: Empowerment

The audiobook version of Ben Behind His Voices has its first official review, from Publishers Weekly - and the fact that the book might reach others who prefer to hear their stories told, rather than sit and read them, thrills me as both the author of the words and as the voice talent who narrated them.

When I agreed to voice the project for Spoken Word, Inc. - a fabulous new audiobook publisher with heart, integrity and a mission which includes donating a portions of proceeds to organizations like NAMI- I was concerned that I might be too close to the words to do justice to my own story.  When the audiobook arrived, I avoided listening to it for some time. I had gone from role of author to editor to voice talent and then to production editor; could I now, objectively, play the role of listener?

So when the first audio review included these words, I was both thrilled and relieved:

"This extremely affecting memoir is made more potent by author Randye Kaye’s background as a professional voice actor. Besides providing crisp, brisk narration, Kaye is exceptional at creating a sense of intimacy with listeners. We hear in Kaye’s performance her simmering frustration... her confusion... her motherly concern during Ben’s moments of sudden vulnerability, and her sadness when she realizes that Ben’s schizophrenia will be a permanent aspect of both his life and his family’s."

"Simmering frustration"..."confusion"..."sadness"..."concern." Every time I do an author event (as I did last night, focusing on what congregations can do to support families dealing with mental illness) I am reminded that there are thousands of stories like ours, probably millions. People share their experiences, and these feelings seem universal to those of us dealing with mental illness in a loved one.

The thing that always makes me feel as though this book has been worth writing and sharing is when families tell me that reading has changed their attitude about speaking up.  When someone tells me that they decided to stop fearing stigma, let go of the shame that truly has no place in any no-fault illness, and speak out for their family - that propels me to continue speaking, writing, giving voice to our story and hopefully encouraging others to do the same.

Thank you, reader,  for telling me about the effect this book - or audiobook - has had on you. Every time I meet you, or get an e-mail from you, I am encouraged and embraced by your your courage.

Together we can make the difference by putting a human face onto mental illness and refusing to bow to stigma. I hope we continue to empower each other to speak.

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.

Ben Behind His Voices: wtnh.com