New Book Dispels Myths of Mental Illness, Gives Hope to Families
More than a decade ago Congress declared the first week of October Mental Awareness Week to draw attention to the efforts of the National Alliance on Mental Illness (NAMI), an education and advocacy group that aims to "change hearts, minds, and attitudes" about mental illness on a grassroots, community level.
Sadly, we still have a long way to go in accurately diagnosing, treating, creating empathy for, and reducing fear of those who suffer with mental illnesses-despite the fact that illnesses such as schizophrenia are estimated to strike one in 100 people worldwide.
The recently published Ben Behind His Voices: One Family's Journey From the Chaos of Schizophrenia to Hope by Randye Kaye is an intimate, honest, heart-wrenching story of a mother and the son she adores slipping away into the throes of mental illness. (The name Ben is fictitious to protect her son's privacy).
It is the ultimately hopeful tale of a family's surviving a nightmare that began in adolescence, causing their loved one's increasingly bizarre behavior. The illness led to runaway episodes, periods of homelessness, seven psychotic breaks, and hospitalizations. Because of a mother and sister who never gave up, the story culminates in finally finding a diagnosis and treatment plan that worked.
Kaye is an actress, broadcaster, voice talent, and speaker and was a well-known Connecticut radio personality for more than 20 years. She is also the Connecticut trainer of Family-to-Family Educators for NAMI, the organization she attributes with "saving her family's life" by empowering them to understand the truth of Ben's illness, keep going, and hang on to hope.
She says her background as an actress and performer makes her a storyteller and helped her write this book.
"It gave me the capacity to step outside the story and tell it," she says. "I think we learn best through stories. You can make the point and teach the facts, but if you don't illustrate it with stories from your life and experience, people can't connect to it."
Kaye's hope is for the story to be gripping and for people to care about "the characters" and also get helpful factual information, which is included as chapter guideposts.
She says she didn't write the book for herself; she had already spent a lot of time processing the grief of having a child with a mental illness.
"The fantasy that nothing can happen to your kid gets shattered-and it's a really tough piece of glass to shatter," she says. "I wrote the book for parents so they wouldn't feel alone, and I wrote it for providers [therapists, school psychiatrists, social workers], so when they meet them-which is usually at the end of their rope-not to judge them, and to allow the families as much as possible to be part of the recovery. I also wrote it for my son-to increase understanding and reduce stigma for those with mental illness. Until we understand it, we have no idea how much courage it takes [someone like Ben] to get up and have a day."
One thing you don't hear in the media, Kaye points out, is how fearful people are of schizophrenia.
"But your nature is your nature," she says. "My son was gentle and kind as a little child and, treated with his medications, he's still that sweet little boy. What I had to get past was not understanding that he had an illness and I couldn't fix him. What do you say when everyone else's child is graduating high school and your child is writing poetry and sleeping until 2 p.m.? It was huge for me when I could find ways to help myself, help my son, help my daughter."
Today, Kaye proudly notes, Ben has a part-time job and is attending a community college part-time, at which he's consistently made the dean's list.
She says this experience has taught her to reevaluate her expectations as a parent, learn patience and acceptance, and that a sense of humor helps a lot. She's learned to live in the moment and to have gratitude for the good days.
"I probably have a library of books on this issue and one of the unique features of Randye's book is the hope, which I haven't really found in other books," says Ann Nelson, a Madison resident and provider education coordinator for NAMI-CT.
A nurse by profession, Nelson made a career change to work for NAMI when she found herself personally impacted by a close family member struggling with a mental illness. She started the first NAMI support group for families of adolescent children in Guilford.
"Randye certainly focuses on that this is a hard road for everyone, but I have a choice how I choose to run this race…going from loss to hope or chaos to hope," Nelson says. "This is what NAMI models. By coming together you feel like you're not the only one-and [learn] acceptance of where you are at that moment."
Unique to people with mental illness is the discrimination and stigma related to it, and that it's a mark of shame on someone that makes him or her inferior, Nelson notes. Many incidents of bullying in schools, she says, are those directed toward young people with mental illnesses.
"I'm always about exposing the truth and exploding the myth of mental illness," she says.
Oct. 2 through 8 is Mental Illness Awareness Week. Visit www.namict.org for programs in your area. Ben Behind His Voices (Rowman & Littlefield Publishers) by Randye Kaye is $26.95, hardcover, and available through your local bookstore.
Amy J. Barry lives and writes in Stony Creek. Email her at firstname.lastname@example.org.