Happier Made Simple™: The 7 Core Phrases and Mental Illness in a Loved One

In the decade since Ben Behind His Voices was published, I've had the opportunity to tell our family story to a lot of people - sometimes more than once, for it is ever-evolving.

If you love someone with schizophrenia, you know this all too well. It is a life lived like a never-ending game of Chutes and Ladders, with moments of rest here and there.

The question I am most often asked, after sharing, is this:

"How do you stay so positive?"

Well.

When Life is Challenging…

It isn't always easy, as you may well know. But - here's the thing that continuously reveals itself to me, no matter what the challenge:

Yes, living happier is a function of what happens to you - no one gets through life unscathed, after all - but it is, eventually, even more a function of what you tell yourself about what happens to you.

And so, I finally wrote a book about it, and it launches officially in a couple of weeks. 

In it, I talk about the "Seven Core Phrases" of self-talk that get me through most situations, and keep me hopeful, though realistic - and, yes, happier.

Yes, living happier is a function of what happens to you - but it is, eventually, even more a function of what you tell yourself about what happens to you.

It's how I "stay so positive."

Let me be clear (and I state it up front in the book) - I cry too.

Life isn't about constant happiness. That isn't even a goal. But neither is it about dwelling on the negative when the time for action has passed, nor about stressing about things that may never happen.

So here are the Seven Core Phrases (meant to be said to oneself, not as advice to others, please) and how they help me when our family deals with challenge or disappointment:

These phrases can set your mind down a different path of association and action. In case of severe trauma, you need to process the shock and emotions first.

Be Here Now:  I use this when my son is in a good place (enjoy this conversation; savor the moment; enjoy his company) - and when he is not (this is where we are right now - what action do I need to take?)

It Is What It Is: This gets me past the moments of regret (why didn't I see the signs earlier?). disappointment (why was my son robbed of a chance to go to college?), and doubt (why me? why him? why us?). There may be no reason for Ben's illness. It simply is. Now what?

We're All Connected: Other families are going through this too. Other people have the illness. Let's talk about it. Let's help each other. Let's reach out. Let's thank the people who have chosen professions that help us (lawyers, social workers, advocates, psychiatrists, etc.)

This Is Good: Savor the moments when the stars align, and your loved one can communicate, eat dinner with the family, etc. Yes, even during Ben's ten hospitalizations, when the phrase simply meant "enjoy the vacation from caregiving for now." We remember what we savor, and learn from what we regret.

All Will Be Well: Depends on how you define "well."  Will Ben ever attain his childhood dreams? Doubtful, at least right now. We learn to adjust our dreams. And I have no idea if the Universe has a "Plan" - but sometimes it helps to believe that it does. Whatever gets you through. As I say in my book: All will be well, just maybe not the way your expected it to be.

Isn't That Interesting?:  Curiosity, and even humor, can lurk underneath the trauma and crises. There have been times (especially when in the company of others who get it) where humor has saved me from crashing; when curiosity instead of complaining led me to learn more, do more, find another way.

Whatever Happens, I'll Handle It Somehow: This gets me through more times than I could ever list. Loving someone with schizophrenia means a lot of second-guessing, a lot of waiting to see if the meds work, if they'll come home, if they will be Jekyll or Hyde at the family dinner. So we do what we can to prepare, and hope for the best after that. This phrase gets me through the times where worry is unproductive.

Want the book? You'll find it now on Amazon, in paperback or kindle - but pssst! On launch day Feb 23 the kindle will be only 99 cents for a limited time! - and I am now working on the audiobook.

I hope it helps. Even a little.

Randye  

Schizophrenia: 3 Moms in the Trenches Podcast

In recent posts, I reviewed two new memoirs from fellow MRQs (Moms who Refuse to Quit) Miriam "Mimi" Feldman and Mindy Greiling. Both memoirs were recently released (unfortunately forced by the pandemic into virtual-only book tours), and are both stellar and unique.

audio podcast or YouTube video

So - we met each other (virtually, of course - what else could we do?) and have teamed up to create a new podcast/youtube show for Moms like us - and also for other caregivers, practitioners, family members, and those (like our sons) who are diagnosed with schizophrenia - if they are in a place to want to hear about our side of the story.

Ben would not care to watch this, I know, as he still lacks insight into his illness (anosognosia) - but our hope is that the content is there for whomever is ready to hear it.

Here is the description:

Three Moms in the Trenches: (East, West, and Mid-US). We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”) Miriam Feldman - Artist, Mom, Author "He Came in With It" Mindy Greiling - member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can")

Podcast can be found here:

YouTube  (please subscribe to be informed as each weekly episode comes out!

Thanks!

NAMI Palm Beach Keynote - Support, Education, Acceptance

Keynote Speech for Annual Luncheon NAMI Palm Beach County, FL - a wonderful affiliate doing so much. This event raised thousands of dollars. Congrats!

The full version of this keynote is available on YouTube. Here, however, are just a few highlights:

Mental Health Awareness Month, for Caregivers too

Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year...but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!

WSFA.com: News Weather and Sports for Montgomery, AL.

Schizophrenia and the Family: In a Nutshell?

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

I've just returned from Warsaw, where I was honored to have the chance to speak to a global audience about our family experience with schizophrenia and recovery in my son Ben - and to have shared the stage (well, one at a time...) with the wonderful Pete Earley, author of Crazy: A Father's Search Through America's Mental Health Madness.

Pete told his story, and I told mine. The challenge was that, while I usually speak for at least a half hour, I had 17 minutes to sum up the last 15 years of chaos, discovery, and hope.  Not easy! But it did encourage participants to pick up the book for the whole story.So, for newbies to this site, here is a "nutshell" version of our path so far. I wrote this to send to NAMI, for possible media interest.

So - the "movie trailer" version of where we've been:

Fortunately, my son Ben (diagnosed with schizophrenia)  is currently doing well - but it has been a long road, and we almost lost him several times - so far. Every time that services are cut, or his needs misinterpreted, we run that risk again. Like many families, we have taken on much of his care ourselves - to make sure things continue to go as smoothly as possible.

 Our story? In a nutshell: 

• Bright, promising childhood - Ben was (is) bright, personable, loving

• Mid-teens: changes begin, become more frightening with the years - isolation, high school dropout, paranoia, a period of homelessness in Idaho

• Finally: diagnosis at age 20 - and I had discovered NAMI, which enabled me to (at last) be an educated partner in Ben's treatment and recovery...when "allowed" to by the system

• A long, dangerous wait for Ben to be "ill enough" to get admitted to a hospital - as if wandering through streets, near-incarceration, and strange visions were not enough

• Five hospitalizations in one year - 2003 -as we awaited the right meds, and then "permission" to be involved in his recovery

• At last - we "declared him homeless" so he could receive some services. Eight years in a group home - recovery progressed, but two relapses as staff ignored family information about Ben's med compliance

• Then, by 2011, improvement included part-time college success, a part-time job...and then a resulting cut in services as Ben was "doing so well".  Sent to his own apartment with extremely reduced support services. Result? Relapse, including police at his door, near loss of his job (thankfully they saw past the stigma), and 7 more weeks of hospitalization as he refused treatment - and was allowed to.

• Partnership finally resulted in stabilization - and Ben now lives with us. He is back to part-time work and college success, and is now enjoying a social life. But without the medication, he relapses within 2 days. We supervise carefully, twice a day.

Message? Recovery IS possible - with four cornerstones of:

• Medical Treatment

• Purpose

• Structure

• Community/Love

The cost of cutting services, and of cutting out the family support system, is: disaster. Families are helpful - IF they receive education and support. NAMI rocks - especially

Family-to-Family

!

Update: Two More Years into Schizophrenia Journey

snow…like the symptoms that can coat Ben’s thoughts

Yesterday I was alone with Ben all day.  Huge snowstorm, hubby away in California, daughter and her husband in their own apartment, driveway covered with a foot of snow.  Ten years ago this would have been a recipe for all sorts of disaster: frustration, loneliness, trepidation. Instead, thanks to treatment which includes medication as well as the other cornerstones of recovery (community, purpose, structure), I was actually glad to have Ben's company.  Here is what happened:

• Ben helped me shovel the driveway - I mean really helped, as in he did 75% of the work.

• Ben cooked us a delicious homemade pizza for dinner.

• We watched an animated movie - well, parts of it - during the required "watchful time" after he takes his meds.

Any parent of someone with schizophrenia will tell you that this is a day to be grateful for - and I am, believe me. No, life isn't perfect, and I still wish for the magic wand (or, more to the point, better research and treatment options), but still I know a good day when we see one.

I'm also thrilled that the book still reaches people, two+ years after publication. Although there have been a few changes in our situation since then (two more relapses, a disastrous foray into "independent living" for Ben resulting in our current living situation where he is at home with us, -with a roommate to boot-, and both a part-time job and more college credits earned), the story of our "journey from chaos to hope" remains relevant- at least according to the readers who have written to me. I am so grateful for the feedback, and the chance to share that continues with each reader (or listener to the audiobook).

Truly honored and grateful...all of a sudden, three new 5-star reviews for Ben Behind his Voices:

1 -"I will probably be listening to the CD over and over again for many years. Gives me comfort and courage to deal with my family member. Thank you so much Randye"
2 -"As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book."
3- "I am so grateful to the author who shares her story to educate and to enlighten those of us who are taking our first steps out of the chaos"

also came across this one, though it was in the form of a comment on another blog, and I can't find the author's page...(ah, Google Alerts)...

"Ben Behind His Voices is surely an inspirational tale a few family’s encounter with schizophrenia. The main target of Randye Kaye’s book is on her son Ben, who struggled for lots of years with psychological well being and compound abuse matters until finally he was as a final point the right way identified with paranoid schizophrenia. Kaye leads her visitors with the family’s very difficult activities using this ailment and their journey toward restoration and acceptance. This book may be a good source for people with schizophrenia and their families. In addition, it serves as the formidable reminder to psychological well being experts to treat men and women influenced with all the ailment with dignity and compassion."

You have truly made my day, readers. THANKS!

Loving through mental illness: "It's like he disappears..."

Sometimes we say things, and they stick.  Ever have someone repeat back to you something you said which touched them, even changed them, and you had no idea you'd said it? That's how interviews are sometimes.

Two years after Ben Behind His Voices was published, I still get the chance to spread the message of our story, and for that I am grateful. I feel like the book's journey has just begun, and though I plan an updated version sometime in the next year to include the latest developments, many tell me that the story is timeless to them, as it reflects where their family is right now in the mental illness journey - or where they hope to be. Others simply like its message of resilience, strength, and hope - regardless of the cause of the challenge.

Tomorrow night I look forward to a book-reading and Q/A at Plainville Public Library in CT.

Here is Lisa Capobianco's story about it in the Plainville Observer, including the quotes I'd forgotten I'd said - to which I added my own italics...

Author to share story of coping with son’s mental illness

November 8, 2013

By LISA CAPOBIANCO
STAFF WRITER
When national voice talent and actress Randye Kaye noticed her 15-year-old son Ben experiencing mood swings, frustration, and isolation, she thought he was going through a phase as a teenager. But as Ben transitioned into early adulthood, his symptoms worsened, and little did Kaye know that he was exhibiting symptoms of gradual on-set schizophrenia.“
This was beyond what I expected,” said Kaye, a former host of a morning radio talk show in Connecticut. “I did not know anything about it—I really had to learn and explore.”Schizophrenia affects 2.4 million American adults age 18 and older, according to the National Alliance on Mental Illness. NAMI reports that schizophrenia, marked by changes in brain chemistry and structure, may inhibit an individual’s ability to think clearly, to make decisions, and to manage emotions. Individuals with schizophrenia may also exhibit hallucinations as well as delusions, and may have a difficult time performing complex memory tasks.
For Ben, he began experiencing delusions at age 17 when he decided to drop out of high school without a realistic plan, and started smoking marijuana. Struggling to find help for Ben as doctors misdiagnosed her son’s illness, several years passed before finding the right medication. Ben was diagnosed with schizophrenia at the age of 20.
“I learned to have empathy for my son and how I could help him", said Kaye, who also serves as a teacher and advocate of NAMI. “When you lose a child to mental illness, it is like he disappears.”

From the time, Ben developed symptoms of gradual onset schizophrenia to the time he received treatment, Kaye said she struggled to support her family as a single parent with several jobs. When she quit her job as a radio station host, Kaye had time to reflect on her family’s experience, and decided to write an account of Ben’s battle with schizophrenia in her own book called, “Behind Ben’s Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope.” In her novel, Kaye said she provides a better understanding of mental illness and the people who struggle with it.Kaye will share her story with residents at Plainville Public Library, 56 East Main St., on Tuesday, Nov. 12, at 7 p.m., reading passages and answering questions. Through her story, Kaye said she hopes readers will gain a greater understanding of mental illness, and how to gain acceptance, resilience, and strength.Kaye also said she hopes not only to spread awareness, but also to break the silence among other families who may be struggling with a mental illness so they may become a sense of comfort for each other.“We need to understand that we are not alone—there is hope,” Kaye said.Kaye said her son, now 31 years of age, has developed stability in his life. Although he continues to take medication, Ben now takes college courses and holds a part-time job while starting a social life.“Parenting comes with adjusting your hopes and dreams,” Kaye said. “If your child develops a mental illness, you have to switch gears and still see what is good.”Kaye’s book will be available for purchase during the event, and is also available online at www.benbehindhisvoices.com.

Radio Interview: "We All Got Issues" Show

What's going on now? Why doesn't Ben "accept" his illness? What tips help families like ours to cope? Latest interview aired today,  September 23, 2013:

What is life like with a family member who has schizophrenia?  During this episode of the "We All Got Issues" show - schizophrenia is the ISSUE.  Dr. Glenda interviews Randye Kaye, the mother of a son with schizophrenia.  Randye is also the author of "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope".

Here is the show - starting with the song "The Climb" setting the tone.  Dr. Glenda Clare is an empathetic, knowledgeable interviewer. 

New Caregiving Internet Radio with WeAllGotIssues on BlogTalkRadio

Amanda Bynes: Will She Become the Celebrity Face of Schizophrenia?

Amanda Bynes is in the news - again. But this time, much of the focus is on the possibility of a schizophrenia diagnosis.  I mention this to Ben, and he says, "Hmmm. Interesting." This story will not, I suspect, make a dent in Ben's insight into his own illness - not now, at least. Patience is key when you love someone with schizophrenia - along with many other qualities.

But we follow the story, to see what the media does with it.  I see Hollywood Gossip report she is on a "drug cocktail" and comment:

"I'm so glad to hear that Amanda is responding to medication (not "drugs"...these are medications to restore balance, not drugs to alter it). Yes, the big question is there: will she take the meds on her own? In my experience, probably not. Many medical reasons for that (see "anosognosia") but her parents should definitely go ahead with conservatorship. It has been a huge help for us! I blogged about this at healthyplace.com, website with great info and support."

My blogs on conservatorship have gotten the attention of Marketplace, a smart and fair show on NPR that is business-oriented, and they have invited me to be part of a show  (coming up this week) on the topic of conservatorship, with Amanda in the news and all. This same issue came to light in when Britney Spears' parents sought to help their child after bizarre behaviors in public brought attention to her possible mental illness as well.  At that time, I was booked to appear on Dr. Drew's HLN show, but got bumped by a Hurricane Irene story. This time, I hope I can be of some help on Marketplace, sharing the family view of how conservatorship can help.

I am Ben's conservator, but it doesn't mean I run his life, or control him. I am simply allowed to help him when he needs the help - and, yes, sometimes when he doesn't know he needs that help. (when schizophrenia symptoms take hold.) It's a safety net. And we need it.

Watch this blog for updates!

NAMI: How Strong Can an Affiliate Be?

The answer: Very Strong.

NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national.  I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.

And, as a speaker and broadcaster, I've had the honor and privilege to see NAMI in action, in so many ways.  As a family member, I know that NAMI helped me to:

• learn about and accept my son's illness

• know that I was not alone, and

• find ways to turn our grief into advocacy and action.

Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness "consumers", others say "clients", or "patients", or "individuals"...and the debate on the right term may go on.  However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.

Keynote on Mental Illness: From Chaos to Hope

Last week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed "From Chaos to Hope." So close to the subtitle of Ben Behind his Voices...it had to be fate.

When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.

The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social work professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening's Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.

I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it's properly supported.

NAMI Educational and Support Programs, and Beyond

NAMI Summit County, in addition to providing the Educational and Advocacy services we often associate with a NAMI Affiliate (support groups, speaker series, Family-to-Family, Basics,  and other educational programs), offers assistance to those who are striving to cope with a brain disorder. These programs include:

Housewarming

Housewarming provides new, basic household items to assist persons who can now live independently. Since the program’s inception, over 1,000 requests were filled (207 in 2011, alone), aiding in the transition to leading and independent life.

Needy Soles

Needy Soles footwear provides shoes, socks and other footwear to those who cannot afford to buy their own. 664 pairs of shoes were provided in 2011 via vouchers provided through our local Community Support Services organization.

Hair Care Program

Limited income can mean sacrificing basic personal care. A trip to the barber shop or salon promotes self-confidence while providing a basic need. Clients may obtain a voucher redeemable at the Akron Barber College. 608 haircuts were provided in 2011.

Creative Kids

A scholarship program offering the opportunity for kids in Summit County with Mental Health issues to participate in extracurricular activities such as art, drama, martial arts, music and more. 

Recovery in mental illness is a community process, and I am grateful to NAMI Summit County for showing me yet another example of what can be done when someone has a vision, and many work together to make it come true. That, indeed, is the path from Chaos to Hope. No one does it alone.

Thank you!

Call Me Crazy: You Are Not Alone in this Fight

Cast of Call Me Crazy

Lifetime is premiering a new film this Saturday at 8 PM:  

Call Me Crazy - and I can't wait to see it. I hope you will watch it too. 

Here is the description from Lifetime:

Through the five shorts named after each title character -- Lucy, Eddie, Allison, Grace and Maggie – powerful relationships built on hope and triumph raise a new understanding of what happens when a loved one struggles with mental illness. "Call Me Crazy: A Five Film" stars Academy Award® and Golden Globe® winners Jennifer Hudson, Melissa Leo and Octavia Spencer, Sarah Hyland, Sofia Vassilieva, Brittany Snow, Ernie Hudson, Jason Ritter, three-time Emmy Award®-winner Jean Smart, Lea Thompson, Oscar®-nominee Melanie Griffith and Chelsea Handler. Laura Dern, Bryce Dallas Howard, Bonnie Hunt, Ashley Judd and Sharon Maguire direct the anthology

NAMI (National Alliance of Mental Illness) is a partner in this broadcast. They have a launched a new stigma-busting initiative as part of the campaign, encouraging us all to share our stories as part of You Are Not Alone in  This Fight.

As I myself prepare to visit Ohio, New York, Louisiana, Michigan, Connecticut and Tennessee in the next few weeks to share our story for Mental Health Awareness Month, I am thrilled that the messages will reach way beyond personal travels and speeches to reach the wide viewing public. 

Here is the story I shared on the NAMI site:

My son has experienced what I later learned is a fairly typical gradual-onset  pattern toward full-blown, and heartbreaking, schizophrenia. After years of chaos, we have gone through the stages of family emotional acceptance (NAMI Family-to-Family saved us, which is why I now teach and train others to teach it) and have hope once again - but that hope is always guarded, affected by stigma, caution and some sense of loss.

One saving grace comes in realizing we are not alone. Speaking out about family experience brings mental illness into the light, where it belongs. My book Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope was created in part to open eyes, ears and hearts to the family experience - and get schizophrenia out of the closet so we can work on paths toward mental and emotional recovery.

Bravo to Lifetime - I hope this movie can help us take another step away from stigma and toward empathy, acceptance and solutions.

Randye Kaye

Conversation Crossroad Interview

Here is the latest radio conversation about mental health, family support, the tragic (and possibly preventable) Newtown shootings, and more. So many issues.

Listen to internet radio with conxroad on Blog Talk Radio

New Video: From Stigma to Stability excerpts

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.

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.

CIT International: A Mother's Gratitude

I have just returned from the CIT International Conference, where I met so many who are passionate about their crisis and mental health work - and though I came there to share  the family view, I learned so much more than I offered.  And yet - everyone who met thanked me for being willing to share our story, and the family point-of-view when crisis hits. Wow. (No, thank you...)

over 400 books personally signed with thanks to CIT folks!

Who was there? Police officers, mental health workers, detectives, Police Chiefs, Psychiatric Nurses, Psychiatrists, corrections officer, security guards, consumers, and family members like David Kaczynski, who spoke about his sibling experience as  brother of the so-called "Unabomber" - though that relationship had so much more to it. David's love for his brother was clear, as was his agony over his brothers' illness: schizophrenia.

When my son Ben was in the first stages of recurring psychosis, when we were waiting for him to get "sick enough" to finally earn a bed in a psychiatric unit (don't get me started on this), we had many encounters with our local police officers while Ben - and we - were in crisis.

I am so happy that these officers were trained in crisis intervention - for their kindness and empathy toward Ben, Ali and me made our traumatic situation more bearable.  And - even more importantly - their CIT (Crisis Intervention Training) made it possible to avoid the trauma-upon-trauma pile-up of emotions that could have escalated the crisis instead.

Lucky for us, we did not have to experience needless "super-escalation."

Lucky for us, our town's officers were either CIT-trained, or listened to the feedback and tips of those on the force who were.

To those who have taken the time to learn and choose Crisis Intervention Techniques over "Power" actions that are also an option, I thank you.  Your kindness and willingness to empathize has made all the difference for this family.

Here's a radio news story on CIT in Connecticut (my home state) from NPR affiliate WSHU - where I sometimes work as classical music host or newscaster.  Mark Herz also did an interview with me on Ben Behind His Voices.

Becoming a Best Seller: The Real Reward

Okay, so not quite a best-seller yet...unless you count being pretty consistently in the top ten in Amazon's Best Seller list in the category ofHealth/Mental Health/Schizophrenia.

Still, the news from my literary agent (Claire Gerus, who is amazing) today, about a year into the book's published life, is a surprise: She actually has a royalty check for us!  This, from the woman who jokingly said to me not long ago (at least I think it was jokingly): "Royalties? What are those?".

So. This means the book is actually making a profit for Rowman and Littlefield (after reimbursement for  their publication expenses), and hence for me and Claire as well.  While this check is hardly large, to be honest, it is a delightful surprise in its symbolism: people are buying, and reading, Ben Behind His Voices.

It also means that more and more opportunities are opening up for me to speak to audiences in person, to meet and collaborate with readers and potential readers - families, providers, doctors, nurses, faith leaders, legislators, media, PAMIS (people affected by mental illness.

Someday!

And at least it's a start. Someday, I still hope to see the book on the USA Today or New York Times Best Seller List (hey, it can have universal appeal, right? Library Journal called it "A darn good read for memoir fans"...), for now the fact that it is getting into the hands that I suspect need it most is the best reward.

I got a Facebook message yesterday from a woman whose son had suddenly experienced a psychotic break - out of the blue.  She said, Someone sent me your book, and I sat and read it during the 5 hour wait in the hospital emergency room while waiting for a bed to be available for my son. Thank you for sharing your journey. We are struggling, but your book has helped me.

Now,  that means everything to me. That is why I wrote the book; that is the real reward. The fact that someone I have never met was helped by our story, and then passed it on to another "stranger"  who might need to feel less alone and have an idea of what to do next...well, it helps me feel that the messages in our story are getting a life of their own, like a child going out into the world.

So, if you know someone who needs "Ben", please share. You are the messenger. Thank you. With your help, the book will get into the hands of those who will benefit from its story and tips - and maybe, just maybe, get it to the bigger "Best Seller" lists. For then, I will know that the increased "Sales" means that more people will have been touched, enlightened, and perhaps helped by its messages.

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!

Touching Lives : Grateful for the Chance

Mental Health and Disability Issues Affect Us All

Keynote: Educate. Collabeate. Advocate

Last month, I had the opportunity to speak about to the wonderful folks at PPAL, the Parent/Profession Advocacy League ("The Massachusetts Family Voice for Children's Mental Health") at their annual conference.  Our family story wasn't the only one presented; there were also two adults who had, as children, survived trauma and illness and abuse to come out stronger and smarter. Their stories inspired me, and I was challenges to honor their experiences by connecting our family's journey to theirs.

Courage is everywhere.

Support is essential. Sometimes the one right word, at the right time, can change a life.

My hope, always,  when I speak about our family's "chaos to hope" with Ben's schizophrenia (and also in writing the book)  is that some of our words will be those "right words" for someone else who may be listening to or reading them.

So happy, therefore, to have heard the following feedback from the fine folks at PPAL:

"96.3% of those who completed an evaluation stated they were, "very satisfied" with your information, preparation and understandability. In addition to the ratings, I thought you might like to read some of the written comments attendant to your presentation and I have listed them below.

o "excellent presentation"
o "she was very inspiring and incredible...have her come back again"
o "loved how she shared the journey of her son...realistic, well done"
o "empowering"
o "I loved her sense of humor"
o "outstanding speaker and presenter"
o "Very well spoken. I'm really happy to have heard her speak."
o "empowering/full of empathy"
o "awesome speaker" o "Very informative and inspirational."

Once again, please accept the sincere thanks from all of us at PPAL."

Thank you!! There is no speaking without a listener. My thanks for the opportunity to connect with all of you at PPAL and see the awesome work you do.

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.