Publication Progress, Ben Behind His Voices

so... we are getting the most complimentary letters from publishers who "wish they could publish" Ben Behind His Voices: One Family's Journey from Chaos to Hope. With one out of every four families affected by mental illness, isn't there a strong need for a story that provides hope, resources, and speaks to the power of love in recovery?

What do you think? some of these comments:

"It's very moving but a very tough sell."

"Thanks for thinking of me for this. I have a soft spot for stories of this kind and found the writing wonderful. "

"I would love to read more--in fact I'm ready to buy the book and can't wait until you find
a publisher...."

"Thanks so much for sending me BEN BEHIND HIS VOICES by Randye Kaye. How chilling it is to read of Ben’s struggle with schizophrenia—Randye expertly relates the horror that undoubtedly comes with a phone call from your son’s school informing you that he thinks he’s having a nervous breakdown. The strength and love in coping with this illness, especially between Ben and Ali, are both obvious and amazing.
While I did admire elements of this proposal, I’m sorry to say that in the end, I wasn’t confident I could break this project out on a large scale in a crowded market."

meanwhile, collecting some great quotes for the back cover!
“Ben Behind his Voices reminds us that schizophrenia is an illness, but not necessarily an identity. It movingly depicts the difficulty and the importance of recognizing, accepting, and managing the symptoms of this disorder.”

John H. Krystal, M.D.
Robert L. McNeil, Jr. Professor of Translational Research
Chair, Department of Psychiatry
Yale University School of Medicine

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

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

Neuroscience Symposium at Yale

For a living, I make people laugh (radio broadcaster, VO talent, emcee, stage actress).  My hobby? Neuroscience.  It actually comes in quite handy, and not just in understanding my son's schizophrenia.

From the "Neuroscience 2010" symposium at Yale yesterday: Kay Jamison Redfield (An Unquiet Mind), award recipient, reminding us that love makes a huge difference in recovery. Re her late husband: "My rage was no match for his wit." How often it helps to keep a sense of humor, even in the middle of a loved one's crisis. Sometimes it's all you can do to locate your own sanity.

Big topic: early detection, possible prevention. According to John Krystal, MD, Chairman of Psychiatry at Yale School of Med, "brain changes associated with psychiatric illness can be prevented and reversed."  Another presenter warns us that "mental illness is like paraplegia of the brain - we can't change that it happened, but how we deal with it can make all the difference in quality of life." Hope, realism, acceptance - all echoed in one morning.

But, clearly, if full psychosis can be prevented by alert professionals and family members, the outlook is better.  More understanding, less judgment, more hope.  Keep funding research, please!

Ben Behind His Voices - further out of the shadows

Claire Gerus, my wonderful literary agent can be contacted at cgerus@comcast.net. The original titles of this memoir represent some of the changes we've gone through as a family since its original draft as To Hell and Half way Back, and first revision as No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance. Present title: Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal .

And, indeed, the "new normal" remains in progress - but there is happy news.  One of the reasons I wrote this book is to provide a vision of hope for families devastated by mental illness.  Many of the chapters spell out, all too realistically, the years of confusion and chaos, with sidebars of information I wish I'd had before Ben's diagnosis.  And we all know that recovery is hardly a straight, predictable road. But - recovery is possible, with a combination of realistic expectations and persistent watchfulness and hope.

Before the symptoms emerged in  mid-adolescence, one of Ben's most endearing qualities was his way with children - warm, insightful, loving. He was a sought-after babysitter and remarkable tutor.

We lost all that under the illness for many years.  If you have gone through this in your family, I don't have to explain this any further.  But - Ben is still there, indeed, behind his voices, and he is emerging from the shadows more and more, with each day he stays on his meds.  This week I got to observe him teaching an art project to pre-schoolers (a homework assignment for a college class he's taking). I saw, for the first time in years, reminders of the patience, creativity and understanding he used to have with kids.

It is possible.  It's not perfect, but it's possible.

Ben's Poetry, age 21

Seven years ago, before Ben's first hospitalization, he took a poetry class at a local community college.  I look at his class assignments now and wonder how I could ever have doubted the seriousness of his illness. Where is the line drawn between creativity and complete inner chaos?

A sample:

GOD
My wind grows weary
Monotony is thick
The rivers ain't clear
As I am stained by this thick...mud puddle
Whilst I bear my own radiance
Sinned they be by a typical DEMONstration
Of a casual world spoiled by love
And a casual battle and death from above
Preaching false ideas
Made right for hatred is doubt
And through this calamity I can hardly reach out...to you.

This short poem makes some sense, though many others did not.  But - the "DEMON" in capital letters? His own radiance buried underneath thick mud?  To whom could he not reach out? To God? To me? But I was there all along, and at that time he refused my love. What was I to do?

Now and Then: Psychic Vampires on the Phone

When your child calls you, do you experience a moment of panic before you pick up? Even though your love knows no bounds? If your child has ever called you for help - the car won't start, he is lost, her boyfriend broke up with her - you know the feeling.  If your child has a mental illness, you come to expect it - sometimes even when things are going well. Your comments are welcome.

Now. A text from Ben. It almost always reads, "call me when you get this please" - and I become aware of an involuntary tightening in my chest.  Will that knee-jerk reaction ever go away? These days, he often has good news to share: a theatre class he enjoyed, a good AA or NA group. But years and years of crisis calls leave their mark. Even in the recent years of recovery, there have been close calls, where only quick action had prevented a new hospitalization.

In the confusing years before the diagnosis - even before the calls began to come in from the police, my neighbors, or hospital Emergency Rooms - there were phone conversations with Ben like this one:

Then, 2001: (Excerpt from No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance and Hope, previous draft of Ben Behind his Voices)https://randyekaye.com/

Now it was March, and he was on the phone again, long distance (and collect) from Idaho. “Hi, Mom. How are you?” Ben had been calling me occasionally ever since he’d been kicked out of Waterfalls at the end of October. Sometimes he called every day; sometimes a few weeks went by before I heard from him. Recently we’d been speaking every few days. I never knew what to expect, what he would say.

“I’m fine honey. How are you?”

“I’m great, Mom.”

“That’s good.” Silence. Where do go from here?

"Mom?”

“Yes?”

”Do you know what a psychic vampire is?”

I stand very still and close my eyes to make this go away, like a child who doesn't want to see the milk she spilled. “A what?”

“A psychic vampire. ‘Cause they have them here.”

This was something I hadn’t heard from him before. What is he talking about? Then: What kind of drugs is he on? Then: Stay calm. “No, Ben. What is a psychic vampire?”

His voice took on that tone of superiority, and yet there was panic in it too.“They steal all your energy. It’s really scary. And there are psychic vampires here, I swear.”

I had no idea what to say to that. I think I assured him that you could prevent these vampires from stealing your energy if you wanted to. If he was on some drug, he probably wouldn’t remember this conversation anyway. But I certainly would. I added this conversation to the list of behaviors that were becoming weirder, and more frequent.

At first, after Ben left the program, he had called to ask for money, or to tell me which friend’s couch he was sleeping on. He reported looking for work, getting jobs, losing jobs within days. He called to tell me he loved me. He called to tell me that he was hungry and it was all my fault. Then, the weird calls had begun:

“Mom, I’m doing great! I spent all afternoon yesterday, walking by the side of the highway, and screaming. I feel so much better now. It’s good to get your feelings out.”

“I’m good, Mom, but I spent the night sitting on the roof and looking at the stars. They are awesome! Oh, and I sang to myself all night. It helps me concentrate.”

“Steve kicked me out, Mom. His Dad said I couldn’t live there since I l owe him so much money. But I think there’s a homeless shelter that will take me in. Then I’ll get a job while I’m living there and save some money and come home.”

And now, psychic vampires. What are the drugs doing to his brain? I was back to thinking that this was just a problem of substance abuse, that Ben had to learn from natural consequences. To do that, he’d have to hit bottom. Good and hard.

And yet, another thought kept growing: the theory that Ben might, after all, be truly ill. What if he hits bottom and is so impaired he doesn’t even know it? What if Ben had some kind of mental illness? So many people had talked me out of that idea in the past. “No, I’m sure he just needs therapy. Sobriety. Structure, discipline. To get closure with his father.” On and on went the theories, on and on went my hopes that this was anything but a real mental illness. Please let it not be true.

If only I could have willed it to be true, loved his symptoms away, I would have. But evidence had continued to pile up, even though I wanted to believe anyone who told be it didn’t, couldn’t, add up to something as serious as mental illness.

(for more information on this book and presentation, please visit https://randyekaye.com/)

opening chapter, the book

This post updated January 28, 2011 - because the "right publisher" has come to us! Rowman and Littlefield will publish Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope in August of 2011! Thanks to Claire Gerus for repping this, and to R&L for believing in it. Please go to www.randyekaye.com to sign up for updates on the book, or join the facebook group Ben Behind His Voices, the book.

Back then I wrote:
The right publisher will help bring hope and understanding to the many families – one out of every four, in fact – who live with mental illness every day.

A young man stands before you. Diagnosis: Schizophrenia.

Is the situation hopeless? No. Is his life worthless? Absolutely not. Is he about to pull out a gun and begin shooting? Despite what the media would have you believe, the answer is still no.

Did his family stand by, helpless and confused, as he fell into pieces bit by bit in ways they could neither understand nor control? Well - yes. Unfortunately, yes.

But is recovery also possible? Can the broken parts be pieced back together? Also – with education, support, acceptance, and love – yes. YES.

I will post excerpts from the book here on this blog, so that others may begin to hear the story. If you want to know more, please follow.

This is from Chapter One:

It’s the night of the Great Northeast Blackout, August 2003. I sit in the ER waiting room, watching my son Benjamin, 21, recently diagnosed with paranoid schizophrenia. He stares at his feet, mumbling to himself, possibly to voices only he can hear and whose existence he always denies. Ben glances up at me now and again, his lips in a faint smile but his eyes clouded and unreachable, and then returns to his inner conversation. Suddenly he looks up once more, this time to address the elderly woman seated in another hard plastic chair across from him, coughing violently.

“Excuse me, ma’am, are you all right?” Ben asks.

The woman smiles. “Yes, son, I’ll be OK. Thanks.” She takes a sip of bottled water; her coughing calms. Only then does Ben abandon the battle to stay focused on the outside world, and give in to the voices. Not until then does he return to his own internal world of psychosis. This, I can tell, is a relief for him.

He’s still in there, I thought. He is worth saving.

This was to be Ben’s fifth admittance to the psych unit in six months. It also marked the beginning of his recovery - and the start of my family’s road to acceptance of his illness. No Casseroles for Schizophrenia outlines that journey, from the bewildering and ultimately terrifying arrival of symptoms, through the crises of psychosis and hospitalizations, and finally to the “new normal” of recovery and hope.

Schizophrenia is arguably the most misunderstood mental illness; certainly no one comes to your door with casseroles when your child is hospitalized with this illness, especially after the first time it happens. But a person with schizophrenia is a person still worth loving – and that love helps immeasurably on the journey to recovery and acceptance.

All is not lost.

Family to Family

Back to teaching NAMI's wonderful course, Family-to-Family. As always, the love and confusion, the bravery and frustrations of these families amaze me.

Yesterday I taught an acting class; one student, wheelchair-bound, was accompanied by his father who took notes, gave physical aid and emotional support. Parents who are "awarded" the responsibility of a child with a disability, whether physical or mental, face many of the same challenges. These parents will not be able to look ahead to the day when their child is totally independent. There is no clearly defined light at the end of any parenting tunnel ...but when your child is disabled, that light is dimmed even more.

Still, the love is evident.

My child, who is 27, can at least walk by himself; he can, when balanced by his treatment, do many things without me. Sure, we still drive him to saxophone lessons, supplement his meager income, take him grocery shopping. He may never be totally on his own. But there is much to be grateful for.

A terrific novel, exploring the family role when there is disability, is Jodi Picoult's Handle with Care. Love is complex, unpredictable, immenseley valuable, and not always easy.

No Casseroles for Schizophrenia

If you are dealing with a mental illness in your family, this blog's for you.
My memoir, Ben Behind His Voices:One Family's Journey through Schizophrenia to a New Normal (formerly titled No Casseroles for Schizophrenia) is represented by Claire Gerus, cgerus@comcast.net. I am a NAMI Family-to-Family teacher and trainer in Connecticut, and professional speaker. My son, Ben, is 26 years old and was diagnosed with a severe case of paranoid schizophrenia about 5 years ago, after many years of confusion for our family during the gradual onset phase. The purpose of the book is to (a) tell the story of Ben's onset, crisis and recovery - especially recovery. All is not lost. Ben's life is worth living, he is worth loving; (b) get the subject - and stigma - out of the closet and into the open air where it can be discussed and, eventually, accepted; (c) provide hope, and some guidelines, for families; (d) educate providers as to what the family experiences when mental illness strikes - increase empathy and respect for the family as well as the person who has the illness. Oh, yes, and attract the right publisher to my literary agent, who believes in this book as much as I do.
Randye Kaye, rep. by Claire Gerus,
cgerus@comcast.net.