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Summary

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.

©2011 Randye Kaye (P)2011 Spoken Word Inc.

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  • Overall
    4 out of 5 stars

Sad,informative

A storyteller really tells it in full detail,from beggining to end.Really really detailed personal story.

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  • Mitzi McCall
  • 04-01-16

I'm glad I listened to Ben's story!

This audible book was fabulous. I am a mother with a teenager with mental illness. I could relate to their story so well. I learned so much. Randye Kaye reading this book was masterful. So easy to listen to and 'feel' every situation.
Thank you for telling your personal story to help end the stigma of this illness that affects individuals and families alike.

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  • Shanonymous
  • 13-06-20

This mother is SO self-absorbed it's astounding.

I'm at chapter 13 and FUMING. This mother keeps treating her mentally sick son as if he's CHOOSING to slack off rather than actually truly suffering from what is likely torturing him inside. To hear her start every sentence with him as "Ben,..." as if she's talking to a toddler (her words) makes me sick. What an overbearing, stifling experience it must be to for Ben who seems to have trouble with simply hygiene. Micromanaging someone with a mental illness will never work.

When Ben goes to the diner with his friend Chris, Chris clearly sees his friend suffering and calls his mom. The mom describes Chris as "Bipolar but in recovery."

HAS THIS LADY STOPPED THINKING ABOUT HERSELF YET, BY THE TIME SHE READS THIS REVIEW?! Mental illness is not like addiction where there's choice involved. There's no "in recovery." There's only "continue taking this cocktail of meds because it appears to be helping now - even though the side effects are atrocious - and when your moods, or hormones, or stress, start causing disruptions, we'll alter them or change them if they lose their efficacy."

There is ALWAYS a high risk of suicide I'm both disorders.

When I got halfway through chapter 13, I listened to the mom rattle off things to do to be prepared to help your child, such as keeping lists of medications and times, sleep schedules, daily activities, awareness, etc. She lists a couple of resources.

Hey lady... you're assuming people made it to this point in your book without turning it off in disgust at your petulance and defiance about the demons with which your son is struggling! You should've listed those resources and necessary documentation at the time of the book in a resources section, for people like me who don't even know your son but empathize - not only for the difficult hand he was dealt, but the fact that he seems to have an incredibly selfish mother. Who picks their son up from a psychiatric stay at a hospital, then less than a car ride home (after a shot of Haldol!) gets so self-centered about the way his chemically imbalanced, recently medicated brain is talking that she drops him off at a bus station instead of taking him home??!! Even the way she sounds aggravated when she mockingly imitates his voice makes my blood boil. No, it's not easy to live with a child suffering from mental illness but if you think YOU'RE suffering, try to remember that THEY'RE the ones suffering ten times worse - especially schizophrenics.

PARENTS of children with medical illnesses! Please use this book as a "what NOT to do when you have a child suffering from mental illness" guide. Go listen to Lori Schiller's "The Quiet Room" instead. I'm in my mid 40s and bipolar, and these scary illnesses that mess with moods and thought are like living with monsters in your head.

My very closest best friend became schizophrenic in his mid 20s. I didn't find this out until I had moved away and lost touch with him. Prior to that, we used to skateboard and surf together all the time, cuddling and talking for all hours of the day in only the ways that the closest of male/female non-relationship best friends could ever do. We were each other's worlds, and when either one of us was in a relationship, our girlfriend/boyfriend had to be comfortable with, and not envious of, the truly best friend closeness that he and I shared. We knew everything about each other, and I was as shocked to find out he became schizophrenic as he would've been to find out I had become bipolar.

We lost touch just before I moved across the country 2 decades ago, and I had never known him after his illness hit. I searched for him all over the internet and social media, and when I finally came across a mutual friend, she told me he'd hung himself just after I moved away. I think about him CONSTANTLY. This is why I feel so strongly about the way the mom treats Ben. She got frustrated with him all the time, as if he was causing her angst on purpose. How incredibly self-centered.

What made me sick to my stomach was that the mom kept waiting for Ben to do something so off the wall that he could be committed to a hospital. When he finally did, she actually said, "I got my wish!" And when she lied to him to get him to the hospital, he didn't know why he was a, but he was scared. At one point he had a cigarette outside and tried to leave but was brought back in by a security guard, who gratefully told his mom, "At least we can have to cuff him." Her first thought? ("Yeah, that's my Ben.") Then the guard said out loud what she SHOULD'VE been thinking: " He seems like a really nice kid."

Ugh, I'm going to force myself to listen more, but I HATE this lady. She is in NO way qualified to teach a NAMI Family-to-Family course, especially if she thinks "Been is on his way to recovery." No honey, this isn't cancer that goes into remission. Medicines only work until they don't anymore, and I pray for Ben's sake that if he slips, he doesn't take his life like my best friend did.

As much as I dislike to say it, as someone who suffers with Bipolar disorder, I recognizine my own materialistic mother like Ben's. I know that my having a mood disorder is thankfully free of delusions of grandeur and hallucination -I'll put money on the fact that by the time I'm reading this in 2020, Ben's already relapsed, likely more than once, thus has lost credibility, jobs, and "privileges" revoked as a result of his illness and *not reluctance*. I suspect that he's overweight due thec side effects of taking antipsychotics, hypnotics, sedatives. I also bet that his mom is continuing to find that her son has become nothing more than a burden, and nowhere to shop him off to thus she likely has unrealistic and lofty expectations that one day the *right* treatment will "fix" him; that one day he'll lead a productive, "normal" (ha!) life. A million dollars says Ben requires strict supervision.

I have a gut feeling that Ben is most likely living at home, because his schizophrenogenic mother couldn't shuffle him off to a place that exists for adults with mental thought disorders. She likely still critical and resentful that it's up to her to completely manage his days, *hopefully* having learned that mental illness does not go away just because her brand of tough love isn't enough to "fix" Ben. A the l imagine that she's sending him conflicted messages of love and accusatory frustration, thus visibly causing so much stress to Ben that he ought to be only improving and by now she'd of the expectation he cannot and will not fall back into psychosis. I do, however, believe he's free from alcohol and drug use because by now he realizes that the unbearable side effects of his meds are exacerbated by this.

This, I believe, is why there hasn't been an updated version of the book in a decade. No worries though - she's clearly upper-middle class and unlike the families of most schizophrenics, has the privilege and the means to buy Ben expensive medicine and dishes out an endless pit of money for his daily, structured activities, expensive medicines, and alternative treatments. Sadly, most schizophrenics are much less fortunate and cannot obtain these luxuries, especially people of color living in gentrified neighborhoods. This contributes to systemic racism because it decreases black Americans' access to having even a modicum of a chance of success, ending up in jails instead of receiving proper help in appropriate and knowledgeable institutions.

Finally, I also believe that while relapse is not a requirement, it practically always occurs during or after a substance abuse 12-Step treatment program (of which a meta-analysis of multiple, unbiased peer-reviewed studies published in reputable scientific journals suggest has only a 6% success rate) although we can never actually know the REAL numbers because through anonymity, there's nobody to keep track of "revolving door" alcoholics/ddicts, and alcoholics/addicts who have died.

Readers of this post: Read at your own peril. If you suffer from a mood (bipolar) or thought (schizophrenic) disorder, you know as well as I do that with no updates since 2011, poor Ben is likely not doing too well today. Probably got some years under his belt, a job, maybe even a girlfriend, but he still does not believe that he is schizophrenic, thus there's greater than a 50% that he tries again to go off his meds because he feels "better". He'll likely think by stopping he'll return to "normal" (which is defined differently by every individual), and sadly, with Ben's chemical makeup, his "normal" is perpetually and consistently delusional.

Or one day he'll despise feeling lethargic, sluggish, foggy, out of touch with the ever-fast moving world, having "brain zaps" from antipsychotics (bipolar and schizophrenics on meds, you know what I mean). He'd need at least weekly monitoring on dangerous Clozapine to avoid swelling of the extremities, breathing problems, blurry vision, fever, Neuropathic Malignant Syndrome (NMS), dizziness, headache, abdominal cramps, & more - if he's still on it - plus often anterograde or retrograde memory lapses, mild to severe weight gain, diabetes.

And he'll determine that he feels better because the voices are gone, thinking he's stable to stop taking his meds instead of living a life of "sanity with side effects". After all, when one v has a cold and begins feeling better, there's no need to continue taking cold medicine, right? The medicine worked, the cold is gone. That's the thought's and mind disorder's justification for stopping. And the mind TRULY believes it.

Good luck, Ben; and Randy, how about a sequel from 2011 through the present. I have zero doubt that the above is close to accurate. I feel sorry for you. No matter how Ben is acting, just love him and accept him, warts and all; you can't "cure" him by manipulating him into hospital visits, getting angry enough at the disease that you drop your son off randomly at a bus station, or testing him like a toddler. He's an adult with an invisible disability. Sure, it doesn't make life easy... but perhaps your purpose isn't to educated the public but rather to educate yourself on how you can best change your own behavior to accept your son as sick and not an intentional trouble maker. I recommend reading your book here once again, and then read "The Quiet Room" by Lori Schiller. Big difference, eh?

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  • Frankie Bennett
  • 27-06-17

Amazing awesome wonderfully stated message

I have found strength to stay the course with my son. I felt the love for a mother and child to find help in spite of all the challenges dealing with mental health.

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  • Kasey
  • 03-06-21

Must Read

Whether or not you have a family member with a mental disability, this is a must read book! It was helpful to understand what tfamilies go through, struggling to get help for those who have a mental illness, and how hard it is to get correctly diagnosed. All the up and downs through the years from family members , and the person with the illness, and LOTS of helpful resources at the end of each chapter. So keep a pen and paper with you.

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  • belle
  • 14-06-19

Love, Learning & Eternal Love

My oldest daughter now 38 has courageouly faced her enemy, schizophrenia for 12 years. She has experienced the joys of success and high achievement. Only to lose much of it to the unimaginable.

She has faced this enemy every day and vanquished this cancer.. Love, information, and more love has restored our faith and belief that nothing is impossible. Thank you for your honesty and for sharing your love for Ben which knows no boundaries. Most importantly, thank you Ben for being one of the best & most selfless teachers I've eveer known. Splendid!

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  • Jessica
  • 24-03-17

Excellent Audio

Great Resource for Families and Providers of people dealing with schizophrenia. Well Done. Enjoyed it.

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  • Karen K
  • 22-07-13

Interesting, if repetitive, look into this world

Any additional comments?

Schizophrenia is something I find inherently interesting but haven't read a full book about before. Memoirs are often written by people with schizophrenic mothers (apparently such people make horrible parents which makes for good memoir material). “Ben” was a high achieving popular type whose crashing and burning was that much more tragic for those around him because of the high expectations you have for such people. When this author discusses the grief for the child you had who is now gone it hit a personal cord for me as an Autism parent. All of us grieving for these people who would never exist after all. There are other similarities as well - the medical types telling you nothing is wrong when you know it is, all those horrible episodes of hoping for things to improve. How you have to educate yourself so much and encounter doctors etc. who know less about it than you do. And how people don't necessarily support the family in the way that they would the family of a cancer patient. Though I will give it to the schizophrenia families that they definitely have worse stigma than us autism families. People probably move away from this family in diners even more than they do from mine. ;-)
In regular schizophrenia, people's lives fall apart when they are teens or young adults. This seems especially unfair somehow. Like parents could maybe begin to relax at that point. Of course I guess it'd be worse if it started earlier And of course parents never really get to relax no matter the age of their kids. Things can go along fine for years and then your 20 year old can start using heroin. All strain and tragedy is relative.
The end of the book is less interesting I guess because Ben’s hospitalizations get repetitive. But of course that's part of the point.

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  • Edward
  • 22-05-13

A Honest But Hopefull Story of Schizophrenia

If you could sum up Ben Behind His Voices in three words, what would they be?

Honest, True, Hopeful.

What other book might you compare Ben Behind His Voices to and why?

A Beautiful Mind: by Sylvia Nasar, is another book about someone with schizophrenia. I like Ben Behind His Voices better, because it is a book that tells it like it is, when a love one of an average family has schizophrenia.

What does Randye Kaye bring to the story that you wouldn’t experience if you just read the book?

She is a good reader. She read it as if she was telling her own story.

If you were to make a film of this book, what would be the tag line be?

Life with Ben.

Any additional comments?

I like this book because there is hope even with a very devastating illness like schizophrenia. If you or a love one has schizophrenia, this is a good book for you.