Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope

by Randye Kaye

Overview

When readers first meet Ben, he is a sweet, intelligent, seemingly well-adjusted youngster. Fast forward to his teenage years, though, and Ben's life has spun out of control. Ben is swept along by an illness over which he has no control—one that results in runaway episodes, periods of homelessness, seven psychotic breaks, seven hospitalizations, and finally a diagnosis and treatment plan that begins to work. Schizophrenia strikes an estimated one in a hundred people worldwide by some estimates, and yet understanding of the illness is lacking. Through Ben's experiences, and those of his mother and sister, who supported Ben through every stage of his illness and treatment, readers gain a better understanding of schizophrenia, as well as mental illness in general, and the way it affects individuals and families.

Here, Kaye encourages families to stay together and find strength while accepting the reality of a loved one's illness; she illustrates, through her experiences as Ben's mother, the delicate balance between letting go and staying involved. She honors the courage of anyone who suffers with mental illness and is trying to improve his life and participate in his own recovery. Ben Behind His Voices also reminds professionals in the psychiatric field that every patient who comes through their doors has a life, one that he has lost through no fault of his own. It shows what goes right when professionals treat the family as part of the recovery process and help them find support, education, and acceptance. And it reminds readers that those who suffer from mental illness, and their families, deserve respect, concern, and dignity.

Product Details

ISBN-13:	9781442210912
Publisher:	Rowman & Littlefield Publishers, Inc.
Publication date:	10/16/2011
Sold by:	Barnes & Noble
Format:	eBook
Pages:	320
File size:	1 MB

About the Author

Randye Kaye is an actress, broadcaster, voice talent, and speaker. She served more than twenty years as a major radio personality in Connecticut, and continues to work in theater, TV, film, commercials, industrials, and audiobooks. She is also the Connecticut trainer of Family-to-Family Educators for the National Alliance of Mental Illness, and a diversity trainer for the Anti-Defamation League. Randye is a member of SAG, AFTRA, AEA, NAMI, The National Speakers Association, and Mensa. www.randyekaye.com

Read an Excerpt

BEN BEHIND HIS VOICES

One Family's Journey from the Chaos of Schizophrenia to Hope

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By RANDYE KAYE

ROWMAN & LITTLEFIELD PUBLISHERS, INC.

Copyright © 2011 Rowman & Littlefield Publishers, Inc.
All right reserved.
ISBN: 978-1-4422-1089-9

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Chapter One

BEGINNINGS

It all started, or so I thought, with marijuana.

Or did the trouble really begin when Ben dropped out of high school, with plans to travel cross-country, search for his father, and knock on doors to ask for work if he needed money?

Maybe I should have recognized schizophrenia when Ben was fifteen, the night he broke down in sobs after a huge fight with me and said, "What's wrong with me, Mom? Please, please, find me someone to talk to. I don't know what's happening. I used to be so happy."

Or maybe earlier, during the first month of high school, when Ben came home and announced, "Nobody likes me at school anymore. I kissed a girl the first week and she liked me, but she doesn't talk to me anymore and all the kids are against me now."

But how was I to know? All I could see was my teenage child in turmoil, my sweet son caught in a really difficult stage of growth. Hormones? stress? More than just adolescence—adolescence squared, then cubed. Everyone told me he'd grow out of it. All I had to do was hold my ground, set limits, be firm, keep loving him.

But there's no loving someone out of mental illness. Love is a major factor in dealing with the illness, in helping the recovery process, but it can't change the fact of the illness itself any more than hugs can prevent the flu. All I knew then was that Ben kept tripping, stumbling, and then falling—and I kept catching him. Always, between episodes of crisis, there was an oasis of calm and promise that made me fall in love with my son all over again.

Perhaps the illness was there from the day he was born, waiting to spring into action, to take over my son's brain like the vines that snake through my maple tree every year no matter what I do. How far back do we search for the answers?

My baby. Benjamin was born on April 30, 1982, nine days late, after a natural labor and delivery. No drugs. See, even now I remind myself, this is not my fault. I did everything right during the pregnancy, I swear— unless you count the Pepto-Bismol during the first week of what I thought was a stomach virus but turned out to be morning sickness. I even got my husband, William, to change the cat litter.

There were no wails of outrage as this child was brought into the light from my womb; there was only a deep breath of life followed by fascination. His face was perfect and somehow wise. He was beautiful, so beautiful. From his very first moment in the world outside my womb Benjamin was alert and assessing the environment through those intent brown eyes that later would so resemble my own. In the hospital room, I stared at this new life, living the first page of his history, and imagined what else would be written there.

I promised my sleeping little baby that I would always do my best, always stick by him. Little did I know how fully, and for how long, those intentions would be tested. Never once, with no history of it in my family, did I expect a mental illness would steal his life from him later on. You imagine cuts and scrapes, broken arms, broken hearts, even car accidents or kidnapping—but never schizophrenia.

Chapter Two

BEN DROPS OUT

and above the content soul flies to meet the morning at the dawn of a newly rising sun Where in the distance the grains of sand cling together and sift through the holes Relying on the wind to bring them closer to God. —Ben (age sixteen) as printed in the Trumbull High Literature and Art Magazine, 1999

I've tried to come up with the amusement park ride that would come close to representing the four years that should have led to my son's graduation from high school. Roller coaster? It's all anticipation of fear, and then the terror mixed with the thrill. But you know you'll be okay, because you know it will end. And you have no false illusion of control: the tracks are laid, the speed is set. Merry-go-round? no. The same view awaits you each time you go around. Which is the ride that takes you from crisis to crisis, with periods of calm and hope in between? Where each crisis escalates so that you develop immunity to it—so that you long for the previous incident, which seemed so difficult then but now seems a breeze in comparison? Which is the ride that raises your threshold of fear each time you ride it? Which ride keeps you blindfolded, so that you can't figure out what is happening or why, which makes abnormal seem normal?

The phone call came at about eleven o'clock one morning in late March. It was from the nurse at Trumbull high. "Can you come in right away?" she asked. "Your son Ben is here and says he is having a nervous breakdown. He does seem rather agitated, and I told him to lie down on the cot."

I exhaled strongly through my nose, an attempt to stay calm. A sound of frustration, anger, fear. A nervous breakdown? What does Ben mean by that? Is this a new excuse for not going to class? Or is he really breaking down? "Of course," I said. "I'll be right there."

When I got to the nurse's office, Ben was sitting up in a back room. Other adults were there with him. The nurse told me that Ben had arrived late to class and then could not sit still. He'd said he didn't feel well. His stomach hurt. His head hurt. And then he'd said he thought he was having a nervous breakdown. Now he was talking with the other adults in the back room. I could see him through the glass portion of the door; he alternated between talking animatedly and staring quietly down at his sandals.

I went in. The room was bare except for the posters on the cinderblock wall: "Just say no to drugs"; "This is a healthy Lung. This is a smoker's Lung." Ben sat on a cot, the scratchy brown blanket unused. The room smelled of bacterial soap.

Two men were in chairs, facing him. One, tall and thin with thinning brown hair, introduced himself as Mr. Kozinsky, a school guidance counselor. The other, Mr. Donofrio, was an assistant principal. He wore a brown sport jacket, unbuttoned. His gray beard was neatly trimmed. His face was lightly wrinkled, like his jacket. His eyes were brown and kind. "Hi, Mom," Ben said.

I sat down in the empty folding chair. Stay detached, I willed myself. "hi, Ben. What's going on?"

My child's eyes peered at me from a hard, unshaven face. "I didn't feel well. I feel better now, but I want to go home."

"What about your classes?"

"I don't want to be here. There's just too much pressure. I can't take it anymore."

I was exhausted. I had heard this all before. Of course you can't take it anymore, I thought. You haven't done your homework in months. Midterms are coming. Why didn't you listen to me?

And then Ben started to cry.

I looked at my son, sighed, and sat back. I looked at the two men in the room. No one seemed to know what to say. Mr. Donofrio looked at Ben for a minute and waited until the tears stopped. "What's really going on here, Ben? Your teachers tell us you've stopped trying, because you think you're leaving high school anyway. Is that true?"

"Yes," said Ben. His tears turned to defiance. "I'm over sixteen, and I don't have to be here anymore."

"We know you don't have to be here, Ben, but it's really best for you. It's a very difficult world without a high school diploma, you know."

"Not for me," said Ben. "I'll be fine. I'm smart. I already know what I need to know."

There was that superior attitude again. Lately I'd seen it a lot. I hated it.

Mr. Donofrio looked at me. I held his gaze and raised my hands in surrender. A small motion, a sign of helplessness. I had heard this before; I'd fought this battle on many fronts. I was out of ammunition. He shifted his focus to Mr. Kozinsky, then back to Ben. "All right," he said. "So, then, what are your plans? are you going to work? do you plan to ever complete your education? What?"

Ben looked at each man and then at me. He hesitated.

The dynamic had changed somehow. Three adults to one Ben, I thought. He's outnumbered for the first time in ages. Maybe he'll listen to reason now that it's coming from a united group of grown-ups. I felt protected. For a few blessed moments, I was not alone. The power had shifted.

Ben seemed less sure of himself—for a moment. Then he took in a breath, sat up straighter, and spoke. his expression hardened, his eyes seemed to stare through me now. "Well," he said, "I want to travel. I want to go around the country and meet people. I think that is a real education, not high school classes."

"Ben," said Mr. Kozinsky. "Where will you sleep? how will you eat?"

"I'll go to the ATM machine and get out money when I need it."

What? This was it; I'd reached my limit. "Oh, you will, will you?" I was trying hard to sound calm but inside I was a knot of frustration. I'd heard this plan before from Ben, but never thought it was so real to him that he'd tell the guidance counselor about it as if it could really happen. I lashed out. "If you don't finish high school, there will be no money to take out from the ATM. Not from my money. I work for my money."

"So I'll earn my own money!"

Mr. Donofrio and Mr. Kozinsky exchanged glances. Then Mr. Kozinsky said gently, "and how will you do that, Ben?"

"Easy. I'll knock on people's doors and ask if they want any chores done. I'll dig a ditch. I'll watch their children." His voice was confident but his eyes were empty. His words were meant to be reassuring but they frightened me. "Don't worry," Ben said. "I've got this covered. I'll be fine."

But I was worried. In my head I considered a number of choice responses, all designed to point out the lack of logic in this scheme. I envisioned my son, dirty and unkempt from his wanderings, knocking on random doors asking for work. I imagined what my own response to such an uninvited visitor would be. I'd lock all the doors. I'd tell him to go away. I'd call the police if he didn't leave.

What is happening to my son? When will he get over this? Is this Ben talking, or is he stoned? he didn't seem stoned. He seemed focused, convinced of the success of his spotty plan, and ready for a heated debate. He looked stubborn. He looked obsessed.

He looked a little bit—crazy.

(Continues...)

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Excerpted from BEN BEHIND HIS VOICES by RANDYE KAYE Copyright © 2011 by Rowman & Littlefield Publishers, Inc.. Excerpted by permission of ROWMAN & LITTLEFIELD PUBLISHERS, INC.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Foreword
Introduction: 2010
Snapshot: The Turning Point
Part One: Warning Signs
Reflections
1. Beginnings
2. Ben Drops Out
3. There Must Be a Reasonable Explanation
4. The Wailing Wall
5. The Black Eye
Part Two: Chaos, Trial and Error
Reflections
6. Frightening Thoughts
7. Almost Arrested
8. The Last Resort
9. Psychic Vampires
10. Diagnosis Roulette
Part Three: Dealing with Catastrophic Events
Reflections
11. Almost Hospitalized
12. Finally, Sick Enough
13. Frozen: Hospitalization Number Three
14. Hospitalizations Four and Five
Part Four: Recovery and Acceptance
Reflections
15. He's Still in There
16. Baby Steps to Normal: Realistic Expectations
17. Ordinary Miracles
18. The Drum Circle
19. Relapse and the Road Back
20. You Can't Reason With Mental Illness
21. Love: the Positive "Second Hit"
22. No Secrets: Fighting Stigma
23. Never Give Up Hope
Resources

Editorial Reviews

Starred Review.

In this must-read for any family struggling with mental illness, Kaye offers a gripping account of her son's battle with schizophrenia. Until Ben was 15, Kaye believed that patience, structure, therapy, and love were the solutions to Ben's academic and social challenges, mood swings, and drug and alcohol abuse. Having struggled to find help for Ben as his illness went unnamed and incorrectly diagnosed, Kaye provides helpful and informative guideposts throughout the book. Now a teacher for, and advocate of, the National Alliance on Mental Illness (NAMI), Kaye covers everything from helping siblings understand a new family dynamic, to managing involuntary commitment proceedings, to getting patients "into the system." Kaye readily acknowledges that no one learns this information voluntarily and reminds readers that it's impossible to reason with mental illness. Along the way, she shares her fundamental belief in love, humor, and hope. This well-written, well-researched, and brutally honest book will provide information, inspiration, and encouragement for many parents.
(c) Copyright PWxyz, LLC. All rights reserved.

Publishers Weekly

'No one showed up with casseroles at our door.' These are the words of Randye Kaye in her poignant new memoir, Ben behind His Voices. Delving into her son's paranoid schizophrenia, Kaye takes the reader on a journey of frustration, heartache, anger, and love. It's every parent's nightmare, but this book is full of hope, knowledge, and empathy. It will make you see mental illness for what it really is: a horribly misunderstood devastation of the mind and soul—a tragedy not just for its victims and their families, but for society. Tragic not merely because mental illness exists—but because we, as a community, prefer to ignore its existence. Ben, and millions like him, need you to read this book.

Karen Winters Schwartz

The book is too good to be true. I love the way Randye talks about her son; she is very direct about her experiences with mental illness in her family. This book is just what our family members are looking for when they learn their loved one has been diagnosed with any severe mental illness. The biggest question out there is whether there is any hope for them; I am pretty sure family members are going to find an answer as well as the understanding that will make a huge difference to all of them. I have nothing but wonderful things to say about this book. I love it!

Paloma B. Dee

Should be required reading for all psychology professionals and students, as well as anyone who loves or cares for someone suffering with schizophrenia. Incredibly well written, profoundly honest, and, perhaps, most importantly, Randye Kaye offers help and hope to thousands of families needing to hear her story! I sat holding my breath as I turned each page. The author is not only a survivor and an incredibly loving mother, she is—by any standards—a gifted writer.

Linda Appleman Shapiro

Randye Kaye has a message for all of us. With courage and fortitude she embraces her son and all his symptoms. She doesn't judge. She doesn't give up. She loves. She hopes. And in this book she explains how other parents can follow her lead and learn from her years of extraordinary experience.

Roberta Temes

Ms. Kaye displays amazing strength by standing up to the mental health system, protecting her son, and, ultimately, letting him go so he could be as independent as possible. Her story is surprisingly easy to read, almost like a novel. You’re rooting for her, for Ben, and for his sister all the way. You will admire their courage as a family as they face the challenges of schizophrenia, when “normal” isn’t quite what they expected it would be.

National Family Caregivers Association

What I find most compelling about Ben Behind His Voices is the author's honesty as a mother about her true feelings. She connects with her readers because she allows herself to be human and vulnerable and share both her struggles and triumphs.

Amy J. Barry

Poignant, stark, and the energy of the scenes are set up really well. This work has screenplay written all over it. The dialogue is wonderful and the pace of the story moves briskly.

Nancy DeRosa

Immediately, I was immersed. The time flew by unnoticed, and I didn't want the chapters to end. Randye is a wonderful writer. I can feel and understand what's happening in such a way that it's almost as though it's happening to me, instead of being told to me. This book is going to be a bible for so many who've had schizophrenia touch their lives as well as for those who wish to understand this debilitating disease.

Gloria Gallo

Persons with mental illnesses, like the rest of us, are surrounded by countless providers and service agents. It is an unfortunate reality that family, the closest and most knowledgeable group in the lives of individuals, are rarely consulted during times of acute crisis or treatment planning. Randye Kaye poignantly illustrates the value of the love of family as they, along with her son, Ben, struggle to make sense of the mental illness that impacts all of them. Randye and her family show unwavering commitment and love to Ben. As much as he has, at times, "been" hidden behind the muddlesome voices of schizophrenia, this caring, devoted family has "been" behind the voices every step of the way along with him. His struggle is theirs to share as can only be understood by family.

Michael W. Mackniak

The story of Randye Kaye’s son’s descent into psychosis and the long road to recovery reads like a diary, complete with dialogue, commentary, and an account of her own emotions as each incident and turn of events unfolds. You would think the attention to detail would weigh down the reader, but it has the opposite effect. It carries the reader along. If you’re someone who has watched a member of your family fall ill, it will also bring you to tears – not tears of sadness but, if there are such things, tears of delight at how she got things so right. There’s a fair chance that in reading Ben Behind His Voices, which is told by Kaye in the first person, you will be reading your own story as well.

North Shore Schizophrenia Society

The book I wish I would have had. Randye Kaye's skillfully written memoir of the extraordinary challenges her family has endured in coping with her son's schizophrenia is filled with hard-won knowledge and inspiring wisdom. This book should be required reading in programs that train mental health professionals; not only would students learn crucial basic information about psychotic disorders that will make them much more competent clinicians, but they'll see the chaos that is created for families when clinicians don't have the educational background they need. Randye's strong connection to NAMI lets readers understand the life saving support that this organization offers families. I wish I would have had access to this much needed book when my daughter had her first psychotic break. The journey of parents whose children develop schizophrenia is too often overwhelming and Randye's warm, insightful, informative book provides a guide about how to survive in the best ways possible.

Susan Inman

[L]ay readers will very likely be held in thrall by Kaye's attention grabbing personal account of her family's journey from the chaos of Ben's schizophrenia to hope. And at a professional level, the book's contents may especially be of enthralling interest professionally to mental health professionals, and also to legal professionals.

Metapsychology Online

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.

Kaye’s detailed record of her son Ben’s terrifying schizophrenia and terrifyingly slow descent into it may strike a chord with parents encountering similar behaviors in their own teens. Because the onset of Ben’s illness was so gradual, everyone chalked up his initial symptoms—extreme withdrawal, falling grades, and more—to a particularly virulent case of adolescent hormones. Denial did play a role in missing clues, but only because Kaye, like many, had no experience with mental illness. Even professionals (teachers, therapists, school administrators) overlooked an obvious-in-hindsight warning flag when the 16-year-old insisted he didn’t need to stay in school. Naturally, single mom Kaye tried everything within the limits of her resources to guide Ben from his self-defeating behaviors. Each effort was promising but sadly short lived. Afterward, the sweet, loving child she once knew would become obscured by an increasingly unkempt, unreliable stranger. Alas, Ben’s eventual diagnosis and treatment was just the beginning. Schizophrenia is a chronic, lifelong illness that hangs in a delicate balance of medication and vigilance.

Booklist

Kaye’s detailed record of her son Ben’s terrifying schizophrenia and terrifyingly slow descent into it may strike a chord with parents encountering similar behaviors in their own teens. Because the onset of Ben’s illness was so gradual, everyone chalked up his initial symptoms—extreme withdrawal, falling grades, and more—to a particularly virulent case of adolescent hormones. Denial did play a role in missing clues, but only because Kaye, like many, had no experience with mental illness. Even professionals (teachers, therapists, school administrators) overlooked an obvious-in-hindsight warning flag when the 16-year-old insisted he didn’t need to stay in school. Naturally, single mom Kaye tried everything within the limits of her resources to guide Ben from his self-defeating behaviors. Each effort was promising but sadly short lived. Afterward, the sweet, loving child she once knew would become obscured by an increasingly unkempt, unreliable stranger. Alas, Ben’s eventual diagnosis and treatment was just the beginning. Schizophrenia is a chronic, lifelong illness that hangs in a delicate balance of medication and vigilance.

Booklist

[L]ay readers will very likely be held in thrall by Kaye's attention grabbing personal account of her family's journey from the chaos of Ben's schizophrenia to hope. And at a professional level, the book's contents may especially be of enthralling interest professionally to mental health professionals, and also to legal professionals.

Metapsychology Online Reviews

[L]ay readers will very likely be held in thrall by Kaye's attention grabbing personal account of her family's journey from the chaos of Ben's schizophrenia to hope. And at a professional level, the book's contents may especially be of enthralling interest professionally to mental health professionals, and also to legal professionals.

Metapsychology

It's the reason parents fear the teenage years—the all-too-common story of a happy, well-adjusted child who slowly spirals into rebelliousness, disaffection, and apathy. Such teens may drop out of school or stop studying, indulge in drugs and alcohol, and possibly commit petty crime. When Kaye's son Ben gradually became "troubled," she tried all of the usual remedies: therapy, tough love, and special camps and schools, but nothing worked. Instead, he became increasingly emotionally unavailable and uninterested in taking care of himself and was eventually diagnosed with schizophrenia. Like many sufferers, Ben doesn't acknowledge his illness and hates the side effects of the medication he needs to function. In the latter part of the book, Kaye describes what she goes through to ensure that her son takes his medication and has a safe place to live. VERDICT An illuminating portrait of a parent coping with the guilt and heartbreak that come from feeling like one can't "fix" one's child. Recommended for anyone who is involved with teens or those with mental disorders, and a darn good read for memoir fans.—Mary Ann Hughes, Shelton WA

Library Journal

A mother wrestles with the advent of her son's schizophrenia and its long, painful unfolding.

Not quite 30 now, the eponymous Ben has weathered many storms within his mind and attempted to calm them with drugs and booze. By mother Kaye's account, he's normal in some ways—he "loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food." Yet it is in the nature of schizophrenia to overturn all that is normal, introducing terror into the lives of those who suffer from it—and those who live with them. Kaye details multiple episodes of madness requiring hospitalization, five times in 2003 alone, each of them calling for resourceful response; but, as she writes, no one in her family quite knew what to do or how to respond. Ben is in remission now, but, Kaye adds, there is no "cure" for schizophrenia, and even as Ben feels the weight of his illness, his "family feels isolated, stigmatized, and often very alone." The author does not play the pity card; indeed, sometimes her prose can seem a touch too matter-of-fact. She is eminently helpful, particularly in the matter of self-medication, which so many of the mentally ill prefer to taking the medications that have been prescribed for them. And for good reason: In a table toward the end of the book, Kaye lists the many excuses for "medication noncompliance," with entirely reasonable causes such as "they don't like side effects (weight gain, sexual performance, sedated feeling)" and "fear of becoming medication-dependent." The author's wariness and weariness come through, but so does her optimism that, with adherence to his regime of medication, her son can one day hold a job, attend school and perhaps even live on his own.

From a literary point of view, Kaye's account pales next to Patrick Cockburn'sHenry's Demons(2011), but it's heartfelt and surely of help to those new to living with mentally ill loved ones of their own.

Kirkus Reviews