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.

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6 thoughts on “opening chapter, the book

  1. Randye,
    Your ability to share your heart with all of its diverse emotions, most importantly HOPE, is tremendous. I continue to be inspired by all that you do and who you are !
    ann

  2. The night of the great Northeast Blackout was my son's first night alone in New York City. While he had disappeared to points south when we were living in South Carolina, I had thought that moving to Connecticut would provide him with something to interest him, something to keep him from slipping off to wherever it was he was going. Something to end what seemed like he was suffering from boredom. He seemed dramatic, restless. I never thought it might be anything worse than that.

    That night, I was terrified. But he survived it, and many more months and years of sleeping in abandoned buildings, hopping trains, running from his never-ending anxiety and fear of things he can't even name.

    Thanks for sharing your story and letting me know that we are not alone.

    Elizabeth

  3. the next post is coming this weekend. Once this book is published, the next one will be about other family stories. you guys are giving me hope that our stories need to be told and heard. I hope you'll keep reading, and stay in touch!
    Randye

  4. Hello Randye Kaye my brother has schizoaffective disorder, he was dx at around 33 but we always knew something was not right. He too is wonderful, kind, simple in many ways but extremely intelligent. He was 1 month shy to getting his PHD in fiber optics engineering. We thought he would be our next Nobel Prize Winner. Now he sits at my parents house eating junk food, gaining wt, taking meds and his only real friend is his dog. We are a very supportive Italian family. Every Sunday pasta dinners where sometimes my brother joins us but it all depends on his moods. I feel for my brother but I feel more for my mother, being a mom I truly can feel everyone's pain. I know we should be grateful that they are alive but I almost feel like he is just existing in his own delusional world. Most of the time he communicates w/ us fine its just that he lives a very unrealistic life. He is on disability and living w/ my parents. I know he needs to be mentally stimulated but our biggest challenge is finding him someone who will help him transition to our world again, ie: part time job…My mother doesn't say this but I know her biggest worry is what will happen to him when she passes. I am a nurse and would love to take care of him but he is extremely stubborn. He doesn't talk to us about his illness. I try to approach him w/ weekly peer group meetings at the local church but he just dismisses it and changes the subject. I wish he would just reach out. I can find so many things that could benefit his illness but he will not have it any other way. My mom is afraid to be firm w/ him b/c he will only run away and live in his car, he did this before and I know my mother could not go through that again….But thanks for your excerpt it has helped knowing that we are not alone. I always pray for an angel to cross my brother's path and guide him to a better life b/c I know he is not that far off…

  5. Dear Anonymous,
    Thank you for sharing your story; I know so many of those feelings all too well. The best thing for my son, I think, was my letting go of the illusion that I could control his life and his decisions. The fact that Ben lives in a group home, and is in charge of his own life (within the house rules) allows us to have a better relationship. While he visits us at home every weekend, usually overnight, I do not have to be in charge of his meds, etc. I only have rules that he can choose to follow during the visit, or we will take him back to his group home. I'm now free to be his Mom, not his caseworker.
    All the things you suggest are certainly reasonable to us, but not often to someone with a mental illness, as they may lack awareness.

    Have you gone to http://www.nami.org for info? Or, better yet, attended a Family-to-Family class? These helped us so much.

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