Faith Leaders: How Can You Help Your Congregants?

Did you know that, according to Mental Health Ministries,

"Surveys show that sixty percent of Americans seeking help with mental health issues turn first to ministers, priests and rabbis. This is twice as many as those who went first to a psychiatrist, psychologist or family physician."

Dream and Reality: Happy Thanksgiving

I had that dream again.

Ben is missing. No one has heard from him since yesterday - or is it a couple of days? He isn't answering his cell phone.

Emergency Room again - but different this time

9 PM. The cell phone rings on my way home from teaching a class.

"Randye? It's Desmond from Harrison House."

Ben's group home. My heart skips a beat, a conditioned response. What has Ben done? Did he stop taking meds? But he's been doing so well!

Desmond senses my approaching panic. "Don't worry, it's nothing major. It's just that we're taking Ben to the Emergency Room. He cut his hand cleaning up the kitchen and he may need stiches."

It's ridiculous but true: I am relieved that Ben needs stitches. Oh, is that all? I think.

Gentle Reality Check - and LEAP with Xavier Amador, Ph.D.

Sometimes Ben’s behavior is so wonderfully ordinary that I almost let myself imagine that none of this ever happened: the hospitalizations, the calls to the police, the fear and chaos.  I can forget, for a while, that Ben has a serious mental illness.

Right Words, Right Time, can offer Hope

I was the keynote speaker this week for the newly-renamed Child and Family Guidance Center, in Connecticut, celebrating 85 years of support and guidance in the area.

Speaking about the importance of early detection, and also of the lasting effect of the "right words at the right time" from providers who are aware of the effect of mental illness on the entire family, I saw a number of heads nodding in agreement. There are so many, still suffering in silence, embarrassed to talk about an medical illness that happens to affect the brain of someone they love.

yes, things can get better

If you're stuck in the middle of the crisis/chaos stage of acceptance, you've no doubt got your hands full just trying to cope with immediate needs. Been there, don't want the t-shirt, hopefully not going back again - but, as you probably know, chaos is only a short trip away without medication compliance. Right now, as always, grateful for every good day.

Joey Pants and No Kidding Me Too

Among the celebs brave enough to "come out" re their mental illness: the wonderful Joey Pantoliano. Here he appears on STAR 99.9 Morning Show (where I used to work, now it's Tad and Marit - with Tommy Edison) talking about his documentary. http://star999.com/Player/100683761/

If you haven't seen the documentary, go here for info: www.nkm2.org

and, as always, www.nami.org

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?

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.

Fragile, Precious Miracles

Now: In the mail, a letter from Ben's Community College. Out of old habit, I feel a tightening in my chest: Oh, no. What now? It takes a long time to erase long-reinforced reactions to bad news. 

This? Good news - a form letter of the best kind. Ben has made the Dean's list for the third semester in a row!

Ben's Goals, and Rosalynn Carter rocks

Former first lady Rosalynn Carter has always made mental health part of her platform, and continues to educate.  Check out this video and her latest book, Within Our Reach.
http://www.amazon.com/gp/mpd/permalink/m3Q34F82H33GZK

People with mental illness deserve respect.  Their courage is enormous, the obstacles often beyond comprehension for those who don't understand.  Ben earned another six college credits this semester, and is on the Dean's list.  Amazing! He's getting his life back in small steps.  Never, never compare his progress to someone else his age whose brain functions without illness.  There are other yardsticks to use.

When I cleaned out my son Ben’s apartment seven years ago, I found a little metal box.

Bring Change 2 Mind

Want a wonderful site to learn more about advocacy and acceptance? Check out http://www.bringchange2mind.org/.  Glenn Close, co-founder, will speak to neuroscientists in November.  Also, as always, check out NAMI for education, support, info - national at http://www.nami.org/ or your state affiliate.

Ben received an evaluation from his drama professor, who has no idea he has schizophrenia. Evaluated him against professional acting standards.  Effort? An A. Acting skills? B- or C+, maybe (and the acting skills grade in the one that he will probably get in the course). 

My own inner voice is shouting "not fair!!!" Would a physical education professor penalize a runner with an arthritic knee for not being able to win the race?  Ben is devastated.  For him, memorizing and delivering his monologue, knowing and executing all his blocking and lines, being a reliable cast member - he thinks he did a wonderful job. So do I.  Every class attended, every assignment in on time -- is it fair to grade according to these exacting acting skills alone? Especially when Ben's scholarship depends on his grades? 

If he hadn't tried, I'd leave it alone. But his commitment and hard work were never in question.

The dilemma: do I tell the professor about how hard Ben struggles sometimes just to follow a conversation, much less remain focused for an entire play?  Does he know what a miracle it was that Ben completed this?  Do I, as Ben's conservator, step in and give the professor this info? It soesn't seem fair that, now that Ben can "hide" his symptoms with the help of meds that also dull much of his energy, for him to be graded on a lack of physical energy on stage.

Dilemma. I so want to Bring Change 2 the Mind of that professor....

"Schizo!!!"

Last night, 7 PM. Place: our local community college. Event: theatre department's performance of Lanford Wilson's play, Book of Days. Ben has a nice size role in this, including a page-long monologue he worked hard to memorize.  Ben, who has been hospitalized seven times in his lifetime for various degress of psychosis, has come far enough to be in this, his second play in one year.  He may major in theatre.  No future in it? I do not care. Ben is completing six credits each semester, and is not cracking under the pressure.  A miracle.

Few know how much of a miracle it really is. Certainly not the 20-something girl seated in front of us, head to head with her boyfriend.  They're looking at the program before the house lights dim for the start of the play.  "Ben Kaye," says the boyfriend. "I know him."  "Me, too." says the girl.  She rolls her eyes and adds, "more like - Ben schizo!", her tone a schoolgirl taunt.

I am schocked. I am shocked at how shocked I actually am. And hurt.  Here I sit, so proud of Ben, so thrilled to be attending this play that he has worked  to memorize and perform.  He is part of something, my child whose illness adds countless obstacles to socialization, to caring, to focus, to belonging somewhere.  And this - this ignorant girl. How dare she! I want to grab her by the wrist, take her out into the hall, and educate her as to how brave my son really is. I want to make her sit down and read about schizophrenia.  I want the stigma to stop.

I share my thoughts with my husband and daughter. Ali looks at this girl, my Cruella de Ville, and takes in her appearance: fishnet stockings, too-short skirt, heavy make-up, superior sneer. "Mom," she says, "all I can say is - consider the source."

Later I will see that Cruella will behave without manners throughout the play: whispering to her neighbors, texting, leaving and re-entering the theatre many times while the play is in progress. Sacrilige. Consider the source, indeed. I don't want to hate this girl, but I do. She has insulted my son.

After the curtain call (and Ben has performed really well, thank you very much), Cruella runs up to Ben and gives him a big hug. Hypocrite or friend? I don't know, I don't ask. But it softens my heart a bit toward her.  She can't help her own ignorance.  But I want to wipe this stigma away with the truth. I want Ben to have the respect he deserves. I want this for every brave person coping with mental illness.

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.

always a wrinkle: the problem with State Budgets

The wide spectrum of developments when your child has a mental illness.

Plus side -wonderful weekend with Ben. Family game of Boggle as we hunkered down in the rainstorm. Ben beat us all, soundly.  His brain when balanced: amazing.

Minus side - Monday surprise: suddenly, the group home where Ben has been living for over five years has announced that Ben will have to leave soon; after all, they are "transitional housing".  No matter that the other residents have been there even longer than Ben.  Also, despite requests, his agency caseworkers have not moved at all in those five years toward getting him on a waiting list for another program.  So now everyone will have to move on this. 

If Ben were to live here at home while in transition (not a good move anyway, as I am a much better mother when I am not a policeman/caseworker too), it would mess up his benefits (meager as they are).  This is what can happen when the State decides it has to make budget cuts that make absolutely no sense in the long run for those with mental illness who are STABLE.  At last. Weigh the cost of supervised housing/stability to homelessness/repeated hospital stays. Should be a preventive care no-brainer.

Grrr.

Good news for the memoir, though! some interest!
Ben Behind His Voices: One Family's Journey through Schizophrenia to a New 'Normal'

represented by Claire Gerus Agency

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?

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI's Family-to-Family Course

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI's Family-to-Family Course

Where truth, support, and hope began: NAMI's Family-to-Family Course

Now: Ben made the Dean's List again! The letter from our local community college confirms his status and adds, "It is a a very worthwhile accomplishment to have become one of our best students." For the first time in over a decade, Ben actually cares about his grades;  there was a time he considered report cards a government plot to control him.  Ten years ago, he was a high school dropout, refusing to discuss his future plans, wandering through our town streets because he "didn't like the stupid rules at home."  Sometimes, then, he slept in the park.  My son, homeless and hopeless. His family: confused, devastated, always at our wits' end.

Recovery takes time - and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family.  This program - one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.

It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not "stubborn", or "going through a tough adolesence" - he was ill, and it wasn't his fault.  What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions. 

I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours.  For free. Still, so many families don't even know what it is.  I urge you to find out.  Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate.  Click on "education" and there you are.

Find NAMI. It's something you can do for yourself - -RK

Excerpt from Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)

In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.


I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.



I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.



I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.

Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact - that proven, medical fact - is a major hurdle for many family members to accept, for it means two contrasting things: one - that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.

With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.

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 almosts 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)
http://www.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 http://www.randyekaye.com/)

Why the title "Ben Behind His Voices""? Excerpt from Introduction

why? because Ben is still in there, struggling to connect through the chaos of senses gone haywire, or sometimes dulled by the meds that keep him out of the hospital, in his brain.

Introduction - 2010

My son Ben knows the lyrics to every song I’ve never really noticed on the radio. He’s the one who teaches to me to appreciate the poetry in songs by Led Zeppelin, Pink Floyd, and Eminem. He’s my favorite companion for performances of Shakespeare in the Park, because just at the point when I’m starting to think why don’t they just speak English already?, he invariably whispers something like, “Wasn’t Shakespeare a genius, Mom? Listen to the music in the way he wrote those lines.” Shame on me.

Ben loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food. He made the Dean’s List at college last semester. He kills at Scrabble. He has offered to counsel my best friend’s nephew, who is still lost in the world of drug addiction.

Ben is 27 years old. And – oh, yes – he has paranoid schizophrenia.

Ben is not “supposed to” care about others - that's one of the symptoms of schizophrenia. But he does. He is full of love, and we're grateful for his presence. Our family has learned to live in the moment; there are, thankfully, many moments to treasure these days. But it wasn’t always like this, and we know, all too well, that tomorrow could bring more change. Still, we have found hope and love that we once thought might be lost forever.

When Ben was hospitalized five times in 2003 – the height of his crisis period - for symptoms of this illness, no one in my life really knew how to react. No one showed up with casseroles at our door– especially not by the third or fourth hospitalization. People don’t really know what to do, how to support the patient and the family. Unlike a physical illness like a broken leg, there’s no timetable for recovery from something like schizophrenia. There’s no sure moment of getting better. There is no cure; there is only management. As is also true with cancer, there’s always a chance for recurrence after remission. But unlike most cancers, the patient’s very soul seems to be affected by mental illness. The organ it affects is the brain, and that’s the window to our personality, perhaps to our soul. People are frightened of mental illness; they’re uncomfortable visiting someone on the psych floor. The family feels isolated, stigmatized, and often very alone. But there is hope. Ben is in recovery. He is not “cured”, but he can be kept in careful balance. He is part of our family. He is worth knowing. He deserves to be understood and accepted, just like anyone with a more visible disabilty.

Every morning and evening, Ben takes medication to keep his brain in balance. He doesn’t agree that these meds do anything to help him, even though if he stops taking them he winds up back in the hospital within days. All he knows is that they make him feel mentally cloudy and physically exhausted. Ben tells me that he feels like a blanket has been thrown over his mind when he’s on his medication; he loves the initial feeling of clarity and energy that comes if he stops taking it. I know that this euphoria lasts only a day or so, but by the time Ben’s brain has raced past that first phase, he’s too symptomatic to realize that anything’s wrong. He generally just thinks that “people are treating him differently” for some reason. Sure we are. When Ben shifts focus to his inner world, and we try like hell to bring him back to us.

Without the medication that restores the chemical balance in Ben’s brain, he has to fight to remain connected to what’s happening around him instead of within him – and the strain of that effort is heartbreakingly apparent. Ben wants, with all his heart, to prove that he doesn’t need the medication that we know has brought him back to us – at least halfway back.

new excerpt: from Part One: Before the Illness

My Baby Boy


April 30, 1982



It’s hard for me not to see Ben’s life in two parts: before the illness - when everything seemed manageable with normal parenting skills – and afterwards, when all hell broke loose. Hopefully, now, he’s in a third phase: recovery. I remain so grateful that Ben’s doing well. But I am still, on occasion, haunted by the child he was, the child we lost. That child is still inside of Ben, peeking through the cloudy veil of schizophrenia and the medications that keep it under control. Like all parents, I miss the baby I once had. But I also mourn the man he might have become, if not for the illness that got in his way.



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



Although - maybe I had chosen the wrong man to marry. Maybe his genes were somehow flawed and I should have been able to see the signs. I’ll never know the answer to that, but it’s the question I am asked most often: “Does schizophrenia run in the family?” I’m not even sure why it matters, except that the questioner wants some kind of assurance that it can’t happen to their child. .......

....(So) before William and I marked our first anniversary, we celebrated the birth of our gorgeous baby boy. 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.
---------------------

SIDEBAR:
Is schizophrenia inherited?


Like many other medical illnesses such as cancer or diabetes, schizophrenia seems to be caused by a combination of problems including genetic vulnerability and environmental factors that occur during a person's development. Recent research has identified certain genes that appear to increase risk for schizophrenia. Like cancer and diabetes, the genes only increase the chances of becoming ill; they alone do not cause the illness.




_____________

To learn more about this manuscript, contact randye@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.

he 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.