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Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope
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.
299 pages, Hardcover
First published August 16, 2011
About the author
Randye Kaye
151 books35 followersRandye Kaye is the author of
Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope
, (Rowman & Littlefield, 2011), and
Happier Made Simple: Choose Your Words. Change Your Life.
(2022)
She's also an audiobook narrator (hence the large number of books in her author profile, most of which she did not write!)
Randye wrote Happier Made Simple in response to readers of her first book, who always seemed to ask her: “How do you stay so positive?"
Randye's hope for her first book, a memoir of schizophrenia (in her son) and motherhood, is that it will help share the honest experience of families, increase respect and understanding for those with mental illness, reduce stigma, and offer resources as well as hope. Publishers' Weekly calls it a "must-read." Library Journal recommends it as "an illuminating portrait...and a darn good read for memoir fans." NAMI Advocate praised it as a "captivating family drama."
Randye also voiced the audiobook ,recently reissued with updates, which was called “among the best of the best” and was nominated for a 2011 "Listen Up Award" by Publishers Weekly, alongside John Lithgow and Jane Lynch in the “read by author” category. Her other work as audiobook narrator is represented here on Goodreads too.
Randye's a noted radio broadcaster (formerly STAR 99.9, now with NPR affiliate WSHU), stage actress and voice talent.
Please visit http://randyekaye.com or http://benbehindhisvoices.com
She's also an audiobook narrator (hence the large number of books in her author profile, most of which she did not write!)
Randye wrote Happier Made Simple in response to readers of her first book, who always seemed to ask her: “How do you stay so positive?"
Randye's hope for her first book, a memoir of schizophrenia (in her son) and motherhood, is that it will help share the honest experience of families, increase respect and understanding for those with mental illness, reduce stigma, and offer resources as well as hope. Publishers' Weekly calls it a "must-read." Library Journal recommends it as "an illuminating portrait...and a darn good read for memoir fans." NAMI Advocate praised it as a "captivating family drama."
Randye also voiced the audiobook ,recently reissued with updates, which was called “among the best of the best” and was nominated for a 2011 "Listen Up Award" by Publishers Weekly, alongside John Lithgow and Jane Lynch in the “read by author” category. Her other work as audiobook narrator is represented here on Goodreads too.
Randye's a noted radio broadcaster (formerly STAR 99.9, now with NPR affiliate WSHU), stage actress and voice talent.
Please visit http://randyekaye.com or http://benbehindhisvoices.com
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Displaying 1 - 30 of 57 reviews
June 27, 2014
Horrifying Read - A Testament to Abuse of Power and Parental Authority
With the interest I have in getting an insight into the living circumstances of people suffering from schizophrenia and perhaps a glimpse of their unique way of seeing things, Randye Kaye's book did catch my eye, So I went ahead and read it. It was even lauded as "inspirational" in the description, but to me it was anything but. What I really got out of the book was an insight into how parental power and medical authority trumped civil liberties - something I didn't think possible in America. Up until that point, I had thought that the supreme court verdict in O'Connor v. Donaldson prevented anyone from being involuntary committed unless they constituted a clear and present danger to other people or at least themselves. Yet here I see how a mother wants her son committed because he talks about "psychic vampires" - and gets her way.
The book enumerates countless times this Ben is being involuntarily committed - usually because of minor psychiatric symptoms, though sometimes because of the side-effects his medication has caused him - on every single occasion instigated by his mother. There does seem to be some skepticism on the part of caregivers about having him committed since he doesn't appear that ill, but Ben's mother always insists. Hence he's forced to take medications that sometimes have death as a common side-effect. Most alarming is her predilection for potent drugs. To quote a passage from the book:
Clozaril, or clozapine as is its clinical name, is a lethal drug that killed hundreds of Americans every year during the period when Randye wanted her son to take it. It's usually given to the truly hopeless cases, the ones that have been through other medications for years without any relief in symptoms, yet she wants her son on it right away! She must truly hate her son. You also get an insight into their dysfunctional family mechanics in passages like this one:
There was no objective arbiter of their dispute though. She was the one established in society, the one whose superior age gave her power over her son, and consequently it was her way of seeing things that was recognized by society. The book details innumerable abuses she commits against her son, like dropping him off far away from home like she does right after that passage, calling the police on him for no reason etc. I'm amazed no social welfare worker intervenes on her son's behalf, but I assume her son wasn't as vigilant about getting his way as she was. He simply didn't bring in third parties like she did. She clearly is a danger to his health though, and I'm amazed he's still alive today in spite of her.
I don't see why she feels the need to have her son committed for the minor symptoms he displays, but I guess she might be suffering from a case of misandry. Ben's father disappeared at an early age, you somewhat get the impression that Randye chased him away, and there's a clear difference in how the male versus the female members of the family are regarded. Anything that can be presented in a bad light about the males, are, while the female ones are treated with kid gloves. The males are made to feel bad about everything. She accuses Ben of making up excuses, yet she has one of her own for every move she makes against her son. It's always his fault she's punching him, having him committed etc.
This isn't to say that I idolize this Ben. Dropping out of school without a plan and smoking weed is obviously not acceptable or responsible behavior. But her reactions seem so exaggerated. Like, she has him attend AA/NA groups for this pot use. I'm straight edge myself and condemn all drug use, but it does seem awfully strange that he's supposed to sit in these meetings with people much older than he is and relate how the drugs ruined his life, when they appear to not have had that much of an impact. I get the impression that Randye wants her son to internalize a negative self-concept by enrolling him in these things. He's even forced to live in an institutional room for six months since she can't arrange any other residence for him and doesn't want him living at home. And this is a guy that has neither been violent with his family, nor stolen anything from them.
I can empathize with Ben since I went through similar events at the same age. In my late teens, my family had fallen apart and everyone but I had become a substance abuser. Yet instead of letting me become an independent adult, the social services intervened heavily in my life, demanded that I attend meetings with them where they attempted to deconstruct my identity - and even tried to have me institutionalized for supposedly lacking social skills. A completely unwarranted intervention that I will never forgive them for. Thankfully my mother (RIP) wasn't like Randye though. She enlisted their help for her substance abuse problems, but didn't want any coercion to be taken against me. The social workers did however read their own interpretations into living circumstances where I was the only one keeping order. That was such a stab in the back, and I had to suffer through two nightmarish years.
Randye talks a lot about her involvement with the NAMI in the book, the National Alliance on Mental Illness, an organization funded by big pharma whose messages is mainly just "you need to take your meds." I wonder if this book had found its way out there if it hadn't been for her partnership with this organization, because there sure are a lot of people wanting memoirs in print who don't find a publisher - me included. All I can see is a mother who first reacts to her son's psychiatric symptoms in an atrocious way, then profits by selling a book about her experience, without letting its protagonist even have a voice in the whole matter. To top it all off, in the "about the author" section I read that she's a diversity trainer for the Anti-Defamation League. Obviously she's not much for psychological diversity, but then again - I don't think "tolerance training" is much about opening people's minds - it's rather dictating to people how they're allowed to think, something she appears very fond of. She also speaks ill of patients' rights and seems to feel that psychiatry should have free hands in treating people in whichever way they want, something that in the past led to forced lobotomies and other such abuses.
For people interested in the liberty aspect of mental health treatment, I recommend an article entitled "Uncivil Commitment: Mental Illness May Deprive You of Civil Rights" or the writings of late Thomas Szasz. Society failed Ben in protecting him from his mother.
With the interest I have in getting an insight into the living circumstances of people suffering from schizophrenia and perhaps a glimpse of their unique way of seeing things, Randye Kaye's book did catch my eye, So I went ahead and read it. It was even lauded as "inspirational" in the description, but to me it was anything but. What I really got out of the book was an insight into how parental power and medical authority trumped civil liberties - something I didn't think possible in America. Up until that point, I had thought that the supreme court verdict in O'Connor v. Donaldson prevented anyone from being involuntary committed unless they constituted a clear and present danger to other people or at least themselves. Yet here I see how a mother wants her son committed because he talks about "psychic vampires" - and gets her way.
The book enumerates countless times this Ben is being involuntarily committed - usually because of minor psychiatric symptoms, though sometimes because of the side-effects his medication has caused him - on every single occasion instigated by his mother. There does seem to be some skepticism on the part of caregivers about having him committed since he doesn't appear that ill, but Ben's mother always insists. Hence he's forced to take medications that sometimes have death as a common side-effect. Most alarming is her predilection for potent drugs. To quote a passage from the book:
Even with smart treatment, there’s no magic formula for successful treatment of schizophrenia. I’d read about a medication called Clozaril, but Dr. Taylor wanted to try that only as a last resort. “There are so many other medications that could work,” he said, “and I’d rather start with those."
Clozaril, or clozapine as is its clinical name, is a lethal drug that killed hundreds of Americans every year during the period when Randye wanted her son to take it. It's usually given to the truly hopeless cases, the ones that have been through other medications for years without any relief in symptoms, yet she wants her son on it right away! She must truly hate her son. You also get an insight into their dysfunctional family mechanics in passages like this one:
I glanced over at Ben; he was smirking. Smirking! He was looking at me like I was a lunatic, and he was the calm one. The superior one, tolerating my unreasonable mood, and just barely. It was all too much. All the months of patience, of waiting for him to come to his senses, of excusing his behaviors, came barreling in. My right hand reached across and slapped him. On the cheek. Hard. How did that happen? “Stop it!” I shouted. “What is wrong with you?”
Ben was stunned. He put his own hand to his reddened cheek and stared at me.
“You bitch!” he yelled. “You hit me. You hit me! You’re crazy, you are fucking crazy!”
And my right hand hit him again. I was nearing a red light and stopped the car, but I could not stop my hand. This time the slap landed closer to his eye. “You earned it!” I heard myself scream. “How dare you call me that?”
There was no objective arbiter of their dispute though. She was the one established in society, the one whose superior age gave her power over her son, and consequently it was her way of seeing things that was recognized by society. The book details innumerable abuses she commits against her son, like dropping him off far away from home like she does right after that passage, calling the police on him for no reason etc. I'm amazed no social welfare worker intervenes on her son's behalf, but I assume her son wasn't as vigilant about getting his way as she was. He simply didn't bring in third parties like she did. She clearly is a danger to his health though, and I'm amazed he's still alive today in spite of her.
I don't see why she feels the need to have her son committed for the minor symptoms he displays, but I guess she might be suffering from a case of misandry. Ben's father disappeared at an early age, you somewhat get the impression that Randye chased him away, and there's a clear difference in how the male versus the female members of the family are regarded. Anything that can be presented in a bad light about the males, are, while the female ones are treated with kid gloves. The males are made to feel bad about everything. She accuses Ben of making up excuses, yet she has one of her own for every move she makes against her son. It's always his fault she's punching him, having him committed etc.
This isn't to say that I idolize this Ben. Dropping out of school without a plan and smoking weed is obviously not acceptable or responsible behavior. But her reactions seem so exaggerated. Like, she has him attend AA/NA groups for this pot use. I'm straight edge myself and condemn all drug use, but it does seem awfully strange that he's supposed to sit in these meetings with people much older than he is and relate how the drugs ruined his life, when they appear to not have had that much of an impact. I get the impression that Randye wants her son to internalize a negative self-concept by enrolling him in these things. He's even forced to live in an institutional room for six months since she can't arrange any other residence for him and doesn't want him living at home. And this is a guy that has neither been violent with his family, nor stolen anything from them.
I can empathize with Ben since I went through similar events at the same age. In my late teens, my family had fallen apart and everyone but I had become a substance abuser. Yet instead of letting me become an independent adult, the social services intervened heavily in my life, demanded that I attend meetings with them where they attempted to deconstruct my identity - and even tried to have me institutionalized for supposedly lacking social skills. A completely unwarranted intervention that I will never forgive them for. Thankfully my mother (RIP) wasn't like Randye though. She enlisted their help for her substance abuse problems, but didn't want any coercion to be taken against me. The social workers did however read their own interpretations into living circumstances where I was the only one keeping order. That was such a stab in the back, and I had to suffer through two nightmarish years.
Randye talks a lot about her involvement with the NAMI in the book, the National Alliance on Mental Illness, an organization funded by big pharma whose messages is mainly just "you need to take your meds." I wonder if this book had found its way out there if it hadn't been for her partnership with this organization, because there sure are a lot of people wanting memoirs in print who don't find a publisher - me included. All I can see is a mother who first reacts to her son's psychiatric symptoms in an atrocious way, then profits by selling a book about her experience, without letting its protagonist even have a voice in the whole matter. To top it all off, in the "about the author" section I read that she's a diversity trainer for the Anti-Defamation League. Obviously she's not much for psychological diversity, but then again - I don't think "tolerance training" is much about opening people's minds - it's rather dictating to people how they're allowed to think, something she appears very fond of. She also speaks ill of patients' rights and seems to feel that psychiatry should have free hands in treating people in whichever way they want, something that in the past led to forced lobotomies and other such abuses.
For people interested in the liberty aspect of mental health treatment, I recommend an article entitled "Uncivil Commitment: Mental Illness May Deprive You of Civil Rights" or the writings of late Thomas Szasz. Society failed Ben in protecting him from his mother.
August 22, 2011
Let me begin by saying that this is one of the best books I've read this year. It touched me deep inside both as a parent and as a professional. I'm a Special Care Counsellor, and I have encountered mental illness both in my extended family and in my field. I quickly realized as I began reading that this is an important book, which is one of the reasons I made a request to the author to review it. I had no idea what to expect when I received it, but I didn't think it would be so good, so well-written, and so insightful.
Although non-fiction, it is a highly readable book and almost felt like I was reading a novel. It gripped me from the first page and I was riveted throughout. The pace, the dialogue, the added information boxes, and Randye Kaye's own writing is amazing. She builds a portrait of her son, Ben, from early onset when no one really knows what is going on with him to his diagnosis and subsequent recovery. The flow of the story is smooth and I easily had a mental picture of the progression of the illness. I appreciated the fact that although the author is a well known radio personality, she did not stray from the story of Ben and how schizophrenia affects a person, their family and their lives.
This book is not about her, but about a mother trying to help her son who is eventually diagnosed with schizophrenia. It is a story any person, whether a sufferer or a relative, can relate to. It made me appreciate the role of family in helping a person recover from mental illness and it made me love my children more. It raised my empathy for families who deal with mental illness. Most importantly, it raised my awareness of schizophrenia, a mental illness that still has a stigma attached to it and is little understood. Early detection is so crucial and thanks to Ben's story, I now know what some of the signs are for detecting schizophrenia.
I want to thank not only Randye Kaye for this very honest portrayal of her son's illness but also her son Ben for allowing us to glimpse at his personal struggles, his fears, his pain, his mental anguish. As I read this book, my heart ached for Randye and for Ben, as well as Ali his sister, but it also rejoiced with them for their successes, their courage, and their advocacy. It is a hopeful book, and one that I will actively promote to all I know. I already have a list of friends waiting to read it as I have been highly recommending it to everyone.
Whether you are a parent, educator, or a reader simply interested in learning more about mental illness, please read this book. It will change you. It will help you understand the world of mental illness, and if you are dealing with someone with mental illness, it will help you see the light at the end of the tunnel.
Note: There are a few f-words (2 or 3) in this book during high stress scenes but I barely noticed them. And that's a first for me.
Although non-fiction, it is a highly readable book and almost felt like I was reading a novel. It gripped me from the first page and I was riveted throughout. The pace, the dialogue, the added information boxes, and Randye Kaye's own writing is amazing. She builds a portrait of her son, Ben, from early onset when no one really knows what is going on with him to his diagnosis and subsequent recovery. The flow of the story is smooth and I easily had a mental picture of the progression of the illness. I appreciated the fact that although the author is a well known radio personality, she did not stray from the story of Ben and how schizophrenia affects a person, their family and their lives.
This book is not about her, but about a mother trying to help her son who is eventually diagnosed with schizophrenia. It is a story any person, whether a sufferer or a relative, can relate to. It made me appreciate the role of family in helping a person recover from mental illness and it made me love my children more. It raised my empathy for families who deal with mental illness. Most importantly, it raised my awareness of schizophrenia, a mental illness that still has a stigma attached to it and is little understood. Early detection is so crucial and thanks to Ben's story, I now know what some of the signs are for detecting schizophrenia.
I want to thank not only Randye Kaye for this very honest portrayal of her son's illness but also her son Ben for allowing us to glimpse at his personal struggles, his fears, his pain, his mental anguish. As I read this book, my heart ached for Randye and for Ben, as well as Ali his sister, but it also rejoiced with them for their successes, their courage, and their advocacy. It is a hopeful book, and one that I will actively promote to all I know. I already have a list of friends waiting to read it as I have been highly recommending it to everyone.
Whether you are a parent, educator, or a reader simply interested in learning more about mental illness, please read this book. It will change you. It will help you understand the world of mental illness, and if you are dealing with someone with mental illness, it will help you see the light at the end of the tunnel.
Note: There are a few f-words (2 or 3) in this book during high stress scenes but I barely noticed them. And that's a first for me.
April 24, 2014
Another book read in my quest to learn more about mental health issues, particularly as they pertain to adolescents. This first person report from the mother of a young man who was finally diagnosed with schizophrenia after many years of struggle is outstanding. Rather than just telling her story, the author includes in every chapter lessons that she hopes others can take from her experience. As a result of her son's illness, she is involved with parent to parent education through NAMI (National Alliance on Mental Illness), and her skill at doing this is reflected in the book. The author is honest about her struggles and how hard she found it to deal with her son before he was diagnosed and she understood how to help him. It broke my heart to read about how many years she spent going to different service providers before getting the appropriate diagnosis. Her son spent close to a year at a residential program and even they didn't come up with a useful diagnosis. At one point, when a professional interviewing her son asked if he saw things that weren't there and answered no, the author asked if ANYONE ever said yes to that question and the professional admitted that no, it's not really a useful question. As someone who works with adolescents in a special program where many are dealing with mental health issues, I'd love to think that the professionals who parents consult can do a better job of figuring out what's wrong and how to provide useful help to these young people.
June 22, 2014
So I read this book to get informed as a friend of someone who may be facing these issues. It is aimed at families who are. But I would recommend it to anyone who simply wants to get educated about the experiences of others and rid themselves of stereotypes in any area.
The book is a true account of a young man's heartbreaking descent into schizophrenia, written by his mother. First of all, let me applaud the absolute bravery of this woman,especially dealing with this issue as a single parent. She adeptly and honestly chronicles the gamut of emotions she experienced throughout the ordeal. Not only has she done a remarkable service to herself and her son by her relentless pursuit of answers and facing the issue head-on, she has also offered tremendous support to families and friends of patients through this book, which not only tells her son's story, but also ends every chapter with "take away points" and resources. In the end, I was struck that her message is ultimately not one of despair but of hope.
Must read if you need it. Highly recommended to anyone else.
The book is a true account of a young man's heartbreaking descent into schizophrenia, written by his mother. First of all, let me applaud the absolute bravery of this woman,especially dealing with this issue as a single parent. She adeptly and honestly chronicles the gamut of emotions she experienced throughout the ordeal. Not only has she done a remarkable service to herself and her son by her relentless pursuit of answers and facing the issue head-on, she has also offered tremendous support to families and friends of patients through this book, which not only tells her son's story, but also ends every chapter with "take away points" and resources. In the end, I was struck that her message is ultimately not one of despair but of hope.
Must read if you need it. Highly recommended to anyone else.
May 13, 2012
I'm not sure if "enjoy" is the right word to use about this book but I could hardly put it down. It was so heartbreaking to read about Ben's slow deterioration and all the angst Randye had about his behavior. It was also heartbreaking to read about all the misdiagnoses that happened before they finally figured things out.
It was all too real. Randye has gathered a really good list of resources for people dealing with schizophrenia or the families members dealing with some with mental illness. I admire Randye's strength.
It was all too real. Randye has gathered a really good list of resources for people dealing with schizophrenia or the families members dealing with some with mental illness. I admire Randye's strength.
June 13, 2018
This is a difficult to experience story and I know it will be impossible for some people to hear it at all. Nevertheless, it is detailed, well written, well presented plus not only is it a particular family’s truth but it is the truth of the way it is. It expresses a reality that could have been so much worse.
January 6, 2019
In contrast to another person's review, I think this mother deserves high praise for how she stuck by her son.
March 17, 2012
This book isn't a great work of literature, but it's solidly written and has just so much to it. It's not only readable but enjoyable and eye-opening.
In it, author Randye Kaye candidly recounts her son's descent into schizophrenia and the gradual, two-steps-forward, one-step-back progress towards what she terms "recovery."
She addresses the fear and doubt she felt as a parent as she tried to reason through what was happening to her son, tried to get him the appropriate help, and at the same time wrestled with the question I think all parents ask themselves when things don't go as they expect with their children: What did I do to cause this? There were times during her description of her son's first four hospitalizations that I found myself in tears thinking of the pain that would accompany the realization that my child's future would be dramatically different than anything I'd imagined.
Kaye offers a glimpse into the nature of mental illness, reiterating that the person is still there behind the disability. She encourages empathy and understanding for people suffering from mental illness and their loved ones rather than fear. This is a tough one for me, as I think it is for many people.
I've known one person with schizophrenia (to my knowledge, at least, and this was just because he was open about his diagnosis and his struggles both with his illness and with its treatment). Mostly he acted within the range of "normal" (whatever that means), but there were a couple of things that were a little off about him. His words were just slightly slurred and had an unusual cadence, for example, and his face seemed to lack the level of expression I expected. He never did anything alarming and had he not mentioned his illness, I would likely not have attributed these things to mental illness at all. These could well have been caused by his medications rather than the illness itself. Yet these little out-of-the-ordinary things put me on my guard. I think it's a natural self-protection mechanism to make note and be wary of circumstances that don't quite jibe with expectations, but I agree with Kaye that it's important to keep these fears in mind and to weigh them against the reality of the situation: that the person in front of us, ill or not, is still a person. As I grew to know this particular person better, I gradually became more comfortable with him and was able to see him for who he was, but I'm a little disappointed knowing that this didn't come more easily for me.
Kaye offers practical information about spotting early symptoms of mental illness. This is much easier said than done, it seems. Kaye's experience makes it clear that even in retrospect, it can be hard to pinpoint when things start to tip out of the realm of "normal teenage behavior" and into something darker. Reading about the early stages of Ben's illness, I kept thinking how my brother acted in many of the same ways during his early teen years. The difference was that my brother moved out of those behaviors while, for Ben, they escalated.
I asked my husband (a biologist in pharmaceutical research) recently what happens in a person's body before they reach the clinical threshold for diagnosis of a disease. "What's happening to the pancreas, for example, before someone's blood sugar levels reach the point of a diabetes diagnosis?"
He replied that scientists just don't know. I'm thinking if it's this difficult to determine the beginning point of an illness that has clear, measurable clinical markers, it must be even more slippery to figure out the changes that lead up to a mental illness, which is subject to so much interpretation on the part of caregivers and treatment providers, and not to mention the person with the illness himself.
Kaye also offers a ton of information about navigating the legal system, the U.S. healthcare system (which, it appears, is even more broken when dealing with mental illness than it is for physical illness, and that's saying something), and finding support, treatment, information, and advocacy for someone suffering from mental illness.
Kaye's story is poignant and honest and has opened up a new way of thinking for me.
In it, author Randye Kaye candidly recounts her son's descent into schizophrenia and the gradual, two-steps-forward, one-step-back progress towards what she terms "recovery."
She addresses the fear and doubt she felt as a parent as she tried to reason through what was happening to her son, tried to get him the appropriate help, and at the same time wrestled with the question I think all parents ask themselves when things don't go as they expect with their children: What did I do to cause this? There were times during her description of her son's first four hospitalizations that I found myself in tears thinking of the pain that would accompany the realization that my child's future would be dramatically different than anything I'd imagined.
Kaye offers a glimpse into the nature of mental illness, reiterating that the person is still there behind the disability. She encourages empathy and understanding for people suffering from mental illness and their loved ones rather than fear. This is a tough one for me, as I think it is for many people.
I've known one person with schizophrenia (to my knowledge, at least, and this was just because he was open about his diagnosis and his struggles both with his illness and with its treatment). Mostly he acted within the range of "normal" (whatever that means), but there were a couple of things that were a little off about him. His words were just slightly slurred and had an unusual cadence, for example, and his face seemed to lack the level of expression I expected. He never did anything alarming and had he not mentioned his illness, I would likely not have attributed these things to mental illness at all. These could well have been caused by his medications rather than the illness itself. Yet these little out-of-the-ordinary things put me on my guard. I think it's a natural self-protection mechanism to make note and be wary of circumstances that don't quite jibe with expectations, but I agree with Kaye that it's important to keep these fears in mind and to weigh them against the reality of the situation: that the person in front of us, ill or not, is still a person. As I grew to know this particular person better, I gradually became more comfortable with him and was able to see him for who he was, but I'm a little disappointed knowing that this didn't come more easily for me.
Kaye offers practical information about spotting early symptoms of mental illness. This is much easier said than done, it seems. Kaye's experience makes it clear that even in retrospect, it can be hard to pinpoint when things start to tip out of the realm of "normal teenage behavior" and into something darker. Reading about the early stages of Ben's illness, I kept thinking how my brother acted in many of the same ways during his early teen years. The difference was that my brother moved out of those behaviors while, for Ben, they escalated.
I asked my husband (a biologist in pharmaceutical research) recently what happens in a person's body before they reach the clinical threshold for diagnosis of a disease. "What's happening to the pancreas, for example, before someone's blood sugar levels reach the point of a diabetes diagnosis?"
He replied that scientists just don't know. I'm thinking if it's this difficult to determine the beginning point of an illness that has clear, measurable clinical markers, it must be even more slippery to figure out the changes that lead up to a mental illness, which is subject to so much interpretation on the part of caregivers and treatment providers, and not to mention the person with the illness himself.
Kaye also offers a ton of information about navigating the legal system, the U.S. healthcare system (which, it appears, is even more broken when dealing with mental illness than it is for physical illness, and that's saying something), and finding support, treatment, information, and advocacy for someone suffering from mental illness.
Kaye's story is poignant and honest and has opened up a new way of thinking for me.
May 27, 2019
This was an honest and heartbreaking story of a mother's journey with a son who has gradual onset schizophrenia. It is both terrifying and tragic that such a lovable, charming and intelligent young man becomes victim to this horrible mental illness. With such little research into mental illness, this book calls for more research into the causes, diagnoses and treatment of mental illness. I felt such frustration and sadness for the author who had to deal with daily terrors of a son in the throes of severe mental illness as a working single mother. Randye insists that there is hope for people suffering from mental illness; through this difficult journey with the support and help of groups such as NAMI, she was able to find hope and light at the end of the tunnel. However, I found this book rather bleak. No matter how much progress Ben made and how long he was able to sustain being vigilant about taking his medications and living a productive life, one never knew when it would all crumble and Ben would have start from the beginning. Even the way the book ends with Ben barely managing to contain his mutterings to himself, it did not leave me with a hopeful outlook; it wasn't going to get that much better for Ben. Ben's illness not only affected Ben and the author as the mother, it severely traumatized his little sister. She could not handle her first year of college and had to take a break and come home. It is all just tragic and terrifying. I hope Ben is doing well today and that Randye and Ben's sister have been able to build a happy and fulfilling life for themselves while they live with Ben's illness.
August 5, 2016
3.5 I have read quite a bit on mental illness and had been wanting to read this book for a while. I found it educational overall and my heart went out to "Ben" and his family as his illness tore them apart. There were a few things that struck me as odd in the book - and they don't even really bear mentioning, other than after I read them I was like "what?".... I wish he had been diagnosed earlier - when she kept excusing his behavior for years it made me want to shout out loud, HELP HIM! but even when I was thinking that, I also knew that it's not as easy as that. Between hoping it's something else, and all the misdiagnosis even when you do contact a "professional" -- it's a very hard journey.
Mental illness is so difficult, and so difficult for us as a society to process and deal with - we are so behind in funding and research. I wish Ben continued healing - he sounds like an amazing young man and is fortunate to have such a loving, supportive family.
Mental illness is so difficult, and so difficult for us as a society to process and deal with - we are so behind in funding and research. I wish Ben continued healing - he sounds like an amazing young man and is fortunate to have such a loving, supportive family.
June 26, 2013
When Randye's teenage son Ben first started acting out, she assumed he was just being a teenager. When his grades slipped and he started running away, she had him checked for ADD. When he dropped out of school, she wondered if he was depressed. But when he sat in the garden all night talking to a tree, thoughts of mental illness started to loom.
This was an interesting and frightening account of one family's experience when a loved member of that family slowly starts to go mad. Since I had seen the title of the book, I already knew what the diagnosis was going to be. But Randye didn't have the luxury of knowing what the end of the story was--she kept trying different things, hoping that something would keep her son from disappearing into that other invisible world. She put him on medication, practiced tough love, sent him to a youth ranch in Montana, and sent him to psychiatrist after psychiatrist. Nothing could fix her son. Nothing, that is, until a psychiatrist talked him into trying some drugs for schizophrenia.
And gradually the book drifted into acceptance. Things are the way they are: schizophrenia can't be healed, only treated. She discussed the difficulties in asking a mentally ill person to be responsible for taking care of their own mental illness.
Hats off to Randye and the rest of her family for refusing to give up on Ben when it looked like he was just being a difficult teenager, and best wishes to Ben himself.
This was an interesting and frightening account of one family's experience when a loved member of that family slowly starts to go mad. Since I had seen the title of the book, I already knew what the diagnosis was going to be. But Randye didn't have the luxury of knowing what the end of the story was--she kept trying different things, hoping that something would keep her son from disappearing into that other invisible world. She put him on medication, practiced tough love, sent him to a youth ranch in Montana, and sent him to psychiatrist after psychiatrist. Nothing could fix her son. Nothing, that is, until a psychiatrist talked him into trying some drugs for schizophrenia.
And gradually the book drifted into acceptance. Things are the way they are: schizophrenia can't be healed, only treated. She discussed the difficulties in asking a mentally ill person to be responsible for taking care of their own mental illness.
Hats off to Randye and the rest of her family for refusing to give up on Ben when it looked like he was just being a difficult teenager, and best wishes to Ben himself.
January 30, 2012
What an up close and personal look into this family's battle with a mental illness. I originally received this book as a gift from a supervisor and I wasn't disappointed with the content. This book is about getting help. It isn't some fluffy story that tells you that everything is going to be okay once your family is hit with mental illness. It is a story about realistically adjusting what your family sees as normal, it's about survival, it's about locating resources and most importantly it is about realizing that life does not end with diagnosis.
This story told from the mother's point of view is successfully supplemented with the writings of her son who is battling the mental illness. His diagnosis becomes an extra member in the family, causing everyone to walk of egg shells and worry about its next move. The novel takes you through the struggle of diagnosis, medications and the connection of support groups such as NAMI. This book it about getting help and not giving up. I suggest the reading of this novel if you are a consumer of the mental health system, a family member or a professional who works in the field like me. This book served as a reminder of what the families I am serving are going through.
This story told from the mother's point of view is successfully supplemented with the writings of her son who is battling the mental illness. His diagnosis becomes an extra member in the family, causing everyone to walk of egg shells and worry about its next move. The novel takes you through the struggle of diagnosis, medications and the connection of support groups such as NAMI. This book it about getting help and not giving up. I suggest the reading of this novel if you are a consumer of the mental health system, a family member or a professional who works in the field like me. This book served as a reminder of what the families I am serving are going through.
May 1, 2019
This book is educational, eye-opening and at times heartbreaking. Ben is a happy, normal child, bringing joy his mother and sister and putting smiles on the faces of those he meets. But when he is a teenager, his personality slowly begins to change. He becomes moody, sullen and argumentative, his old focus and motivation nowhere to be found. His mother tries everything she can think of to help him, to no avail. Years later, after numerous consultations with therapists, interventions and even brushes with the law, he is finally diagnosed with schizophrenia. Kaye tells the story of their journey from Ben's first symptoms to where they are today, leaving no detail unexplored. She also adds "chapter guideposts" along the way to help educate about aspects of the illness/treatment options for families in the midst of crisis. Kaye does an amazing job chronicling her family's story and because she is a professional narrator, the audiobook is beautifully rendered; how she tells the story without breaking down is beyond me. This book is a much needed resource for anyone facing a mental illness diagnosis and wondering where to turn and how to navigate the mental health system.
May 14, 2019
I chose to read this book because May is mental health awareness month and because I have a brother who struggles with schizophrenia. This book was well written and very informative. I found this story to be a true story of hope. I encourage everyone to read this book whether you know someone who struggles with mental illness or not. It’s a must read.
November 10, 2011
Having a relative with this illness, I was particularly interested in this story. Written by Ben's mother, Randye Kaye, she places the reader in the midst of her family's turmoil. She doesn't pull any punches in the feelings she has over time as she and Ben, along with her daughter Ali, battle this disease. At times it is heart-wrenching and extremely frustrating as there appears to be progress one moment, then chaos. The book speaks to a variety of issues related to the illness itself including the difficulty of diagnosing this disease, treating it, and the "system" and the MANY hills one must climb to get help. A good read
April 18, 2012
What can you say about a book that chronicles the descent of a sweet child into mental illness? This is an excellent book, which everyone should read. Mental illness -- and especially schizophrenia -- is so stigmatized that people are afraid of those who are ill. It is sad to watch, with the author, as her sweet, bright son deteriorates before her eyes, and the years of seeking it took before someone correctly diagnosed his disease. And her reactions -- not wanting to be with him, but wanting to protect him; hating him while loving him; missing the beautiful child he once was -- are heartbreaking. I highly recommend this book.
August 1, 2012
What an amazing book! Very informative, but above all, the love the author has for her son, Ben, shines through - even when Ben is feeling his worst. How this woman was able to handle this pretty much by herself is beyond me. I think there were days when she only had 2 hours of sleep. She had to find out what was wrong with Ben, then try to find someone who could help him, go through all kinds of red tape, still work, raise a daughter, - & Ben was not always cooperative. I highly recommend this book to anyone, if only to learn more about mental illness & how it changes the life of the person who has it & the lives of his family & friends.
June 30, 2013
While there was plenty to learn from this account, I found it to be tedious and laborious. A much more concise account would have been preferable. The details were far too many and over explained, and often unnecessary. I do, however, commend Randye Kaye for her persistence in the face of enormous difficulties, for her strength and perseverance in the midst of great trial. I read this book because I've wanted to see what other families have gone through when schizophrenia entered their lives, as it did ours, and the more I read, the more I realize how very fortunate I am that our situation isn't any worse than it is.
August 23, 2011
I wasn't planning to read this while on a trip to London, but it was so gripping I had to take it with me. Randye Kaye's story of her son's gradual descent into schizophrenia,had me hoping and despairing by turns, but rooting for Ben all the way. I know this story is true, because it so exactly mirrors my own, and it could only have been written by someone who's been there. The style is polished and fast-paced, with helpful sidebars giving practical information. I highly recommend this to anyone facing a diagnosis of mental illness within the family. Randye's compassionate eye is inspiring.
November 19, 2011
Kaye has written a book valuable in two ways - as a beacon of hope for families with members afflicted by schizophrenia and as a wake-up call to to society to rethink prejudices against mental illness and the (lack of a) safety net for these vulnerable members. Tracing the journey of Ben's childhood and teen years to the moment in young adulthood when he was finally diagnosed - albeit incorrectly at first - as ill, Kaye creates a moving portrait of a her and her' son's struggle to understand what was so very wrong.
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March 1, 2012Ben was an average teenager until his world began to crumble. Unable to focus and diagnosed with ADD, he dropped out of school at the age of 16. He spent the next few years jumping from job to job and misdiagnosis to misdiagnosis. It was finally in his early twenties that Ben was diagnosed with schizophrenia and he and his family began to get the help they desperately needed to heal.
Author Randye Kaye, Ben's mother and a radio personality, writes honestly and with hope of her family's journey through the world of mental illness.
Rika G.
Author Randye Kaye, Ben's mother and a radio personality, writes honestly and with hope of her family's journey through the world of mental illness.
Rika G.
February 25, 2013
OK, it's a bit heartbreaking autobiography/biography. My mom had schizophrenia, which was diagnosed after I left for college (mania depressive disorder, bipolar, etc... before finally schizophrenia.) She drank and popped pills like candies, so I really don't remember the positive and negative symptoms of her schizophrenia. But the bottom line is that her feelings more or less mirror my feelings as a mom of a child with severe mental illness (not schizophrenia though.) It calls for patience, courage, love and hope as a parent.
January 12, 2012
The harrowing story of a parent's progress through life with a mentally ill child is again documented, this time most helpfully- with "chapter guideposts" provided. Though I thankfully don't have a child with this devastating illness, I would think that this book could be more helpful than most. It is not just an adrenalin rush through the chaos such a personality unraveling brings; it provides more- step-by-step suggestions to help a parent's progession through each stage of the disease.
March 4, 2018
Must read!
I’ve been on this journey in the world of schizophrenia for eight years with my family member. In many ways, Randye’s story parallels ours.
It’s important to hear other’s stories so that we know we’re not alone. Randye also adds guidance at the end of each chapter with critical information for anyone on this journey.
I’d recommend this book to anyone, whether or not you’re dealing with schizophrenia in your life.
I’ve been on this journey in the world of schizophrenia for eight years with my family member. In many ways, Randye’s story parallels ours.
It’s important to hear other’s stories so that we know we’re not alone. Randye also adds guidance at the end of each chapter with critical information for anyone on this journey.
I’d recommend this book to anyone, whether or not you’re dealing with schizophrenia in your life.
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February 7, 2014A New Perspective
As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book.
As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book.
January 23, 2012
This book was crazy good. The things sam's mother had to go through were beyond crazy. Very entertaining/informational for those wondering what it would be like to live with someone with a mental illness.
June 20, 2012
Excellent book...a unique hybrid between a memoir with an emphasis on a mother's heartbreaking (and incredibly brave) experience in coping with her son's ongoing schizophrenia and an educational tool for all families dealing with mental illness.
April 27, 2013
This book has been one of the most meaningful books to my life. It is my story, almost to a tee. I so related to her experiences with her son because they are so similar to my story. And I learned so much.
February 19, 2016
Told by a family member this memoir gives an important perspective on how the love and commitment of family members plays an important role in recovery. Listening to the audiobook gave an all-too real glimpse into the lives of all family members.
September 29, 2017
I enjoyed reading a perspective of a family member of someone with Schizophrenia, as well as a perspective of a family member who has sent their child to a group home, as I worked at one once... Good perspective.
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