A Mother Chronicles her Son’s Mental Illness
Written by Katrina Daniel Thursday, September 15 2011
Snapshot, Randye Kaye, author, Ben Behind His Voices: One Family’s Journey From the Chaos of Schizophrenia to Hope
Randye Kaye has many loves and talents. She is an actress, radio newscaster and classical music host for two NPR affiliates. She is a public speaker, singer, and, now, an author.
Kaye’s son, Ben, is schizophrenic. As a single mother, Randye Kaye struggled for years to understand, come to grips with, and finally do successful battle with a debilitating mental illness that few fully understand and fewer still live with successfully.
At first, Kaye could not understand what had happened to her formerly sweet, gentle, loving young son when his personality changed drastically. The change was much more severe than the usual teenage hormone -induced angst, and it left Ben anxious and scared. He said to her, “What’s wrong with me, Mom? Please, please find me someone to talk to.”
In her just released book, Ben Behind His Voices, Kaye chronicles the steps of the life journey that took her from young mom to a disillusioned and frightened parent and one who emerged as a fighter against misdiagnosis, mistreatment, and misunderstanding of a challenging mental illness, schizophrenia.
Randye Kaye lives in Connecticut with her family.
Womenetics: Take us back to the time when you were just a regular young mom, living with a teenage son, Ben, and how this life drama unfolded.
Randye Kaye: While raising my children, I was a full-time morning personality for a top-rated Connecticut radio station in addition to my voice-over, on-camera, and theater work. During that time, my son Ben was going through confusing and other terrifying changes, what I later learned had been the symptoms of gradual-onset schizophrenia. So, at work, my job was to make people laugh, but my “hobby” became mental illness. I finally found education and support through NAMI, the National Alliance on Mental Illness, and I became a teacher and the Connecticut state trainer for the Family-to-Family educational course.
Womenetics: Tell me about Ben; what kind of kid was he?
Kaye: Like many with mental illness, Ben’s symptoms did not appear until his teens. As a child he was sweet, gentle, talkative, loving, and incredibly bright. He still is, though sometimes (when he is not being treated properly for his schizophrenia) these qualities are dulled by his symptoms. But he is always on there – that is his loving nature – hence the book title.
Womenetics: What was it that inspired you to write a book about your journey with Ben and his illness?
Kaye: As Ben began to get treatment and come back out of the shadows of schizophrenia and take steps to get his life back, I wanted to share our story as a family for several reasons – to clearly depict what families go through, to support others going through the same thing, to educate providers from the family side, to advocate for early detection and better services, and mostly to reduce stigma, increase understanding and respect for those with mental illness and their families, and to share the lessons that helped us.
This is a book, above all, about the power of love, education, and hope. One in four families deals with mental illness, and many feel they are all alone. This book, which I hope weaves a true and gripping account of one of those journeys, interweaves some practical lessons along the way.
Families need SEARCH – Support, Education, Acceptance, Resilience and Respect, Communication Skills, Humor and Hope – to survive the changes mental illness brings, and through this book I want to help encourage them to find those things. I also speak to various groups about these lessons.
Womenetics: What was your biggest challenge when dealing with Ben?
Kaye: The biggest challenge, the hardest part, was not knowing what was wrong. It took years to get a diagnosis, and all that time I was trying everything to “fix” him. I had no idea he was developing a mental illness. I got advice from people such as: “He’ll grow out of it;” “Find him a male role model;” “Punish him;” “Take the car away;” “Tell him to just snap out of it;” “Let him learn from his own consequences.”
Womenetics: In writing this book, did you keep a journal to remember everything you went through and tried, or did you have to start from scratch when you decided to write the book?
Kaye: It was like the longest term paper ever! I used my own journals, hospital records, Ben’s poetry and school essays, report cards, Ali (his sister’s) letters to her brother, tape recordings of conversations, and documents I had sent to professionals about Ben’s symptoms.
The original title of the book was “To Hell and Halfway Back” referring to the difficult period of not knowing what was wrong, then the recovery that brings improvement but never a full return. The second idea was “No Casseroles for Schizophrenia” because, well, they don’t bring ’em to your door when your child has this kind of illness. The current title was brainstormed with the help of my wonderful literary agent, Claire Gerus.
Womenetics: What did you learn about yourself while going through this long experience?
Kaye: (That) a mother’s love has no boundaries, but no one can do it alone. Getting SEARCH for myself was, and is, essential. NAMI was the source of so much of it, as well as the books I read. So I wanted my book to do the same for others. I also reinforced that fact that no parent can control, or fix, everything. Sometimes you just have to take care of what you can, and of the rest of your family.
Womenetics: What generalizations, if any, can you make about professionals in the psychiatric field?
Kaye: Their skills vary, as do their personalities. Some were, in retrospect, positively clueless as to what was going on with Ben, and I wasted a lot of money on those people. Others, though, were amazing. They knew what they were doing, took the time to involve the family in treatment (by at least listening for information and emotions), and had a team approach. A big theme, though, seems to be this: Many are not properly educated about mental illness and therefore think it can all be helped by therapy alone. We need required education in the major mental illnesses for therapists, psychologists, caseworkers, social workers, guidance counselors.
Womenetics: What did you learn about other people?
Kaye: They may want to help but don’t know how. Mental illness scares them because it gets nothing but bad press. Your true friends, though, do their best to learn and to support you. Community is essential, and there are new communities to be found.
Womenetics: What’s your relationship with Ben like now? And, what is Ben’s reaction to this book about his life?
Kaye: In recovery for eight years now, Ben continues to rebuild his life. He has had a few setbacks, described in the book and in my blog, but that is often part of the recovery. Right now Ben has a job, is making the dean’s list consistently in college as a part-time student, participates in family activities, and never forgets anyone’s birthday. We love each other a lot, and he loves his sister, new brother-in-law, stepdad, and the rest of our family, and we all get along very well. One of the best signs that Ben’s treatment was working was the fact that we stopped arguing.
(As for his reaction) I’d say “guarded.” Ben gave me permission to write the book, he gave me permission to use his poetry, as long as I changed his name in the book. I also think there is part of him that is proud that his story might help someone else, but right now, like many in his young age group with schizophrenia, he lacks insight into the reality of the illness. In other words, he doesn’t think he is “sick.” But he is really proud of how far he has come, and he credits the fact that he has not used any marijuana for years.
Womenetics: What would you do differently if you had to do it all over again?
Kaye: Learn more, sooner. Advocate for early detection, so Ben could have been treated more quickly.
Katrina Daniel is an award-winning journalist and broadcast reporter/anchor. She has worked in Miami, Los Angeles, New York, and as a national correspondent for several networks. She commutes between Miami and the Carolinas, writing for magazines and news organizations. She lives with one horse, four dogs, and a cat.
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