Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope by Randye Kaye
My rating: 4 of 5 stars
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.
Imperfect Happiness 
Thank you for your kind review – and the honest, insightful comments that follow. I’m glad that our story opened some thoughts along your journey to empathy for those with mental illness – a road that, I must admit is still hard for me sometimes. The “lack of level of expression” you mentioned is called blunt affect – and it is one of the most painful “negative symptoms” of schizophrenia. To see the light go out on the face of a loved one is a painful reminder of what used to be, and what might have been. And yet – there are times when that light comes on again, in a genuine laugh, smile, burst of enthusiam – and it gives us hope and gratitude.
You husband is right when he says that “they just don’t know.” Dr Thomas Insel reminds us that waiting until psychosis to diagnose a psychiatric disorder is like waiting until Stage 3 to diagnose cancer – or for the heart attack to say “yes, you have heart problems.” More research, better medication will most certainly help. In the meantime, we tell our stories to do what we can to reduce stigma and promote possibility. Thank you again for taking the time to read and review it.
From one imperfectly happy person to another!
Best,
Randye Kaye
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Randye,
Thank you so much for your comment! I actually got your book from my husband. You spoke at his company several months ago (he’s at a company that’s studying treatments for schizophrenia), and each employee got a copy of your book. When he came home from work that day, his comments about your visit were so compelling that I knew I wanted to read Ben Behind His Voices. I really enjoyed reading it, and actually found myself feeling a little sad today to know that I’m done with it and don’t have your story to go back to today. Usually I only get that feeling with fiction, so I think that says something about how much Ben’s and your story gripped me. After reading it, I feel even more proud that my husband has a chance to be a small part of improving the quality of life of people suffering from schizophrenia, and for their families.
Thank you again for taking the time to comment.
Warmly,
CJ
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