A Family's Journey with Schizophrenia
By Jessica Edwards, NAMI
In this real, honest and vivid story of a family’s struggle with schizophrenia, author Randye Kaye shows the reader what it is like for a family to be in chaos due to mental illness. Struggling with the changes her son, Ben, undergoes a transformation from sweet child to troubled teenager to, eventually, an adult with schizophrenia. Kaye does an outstanding job of reflecting how mental illness can rule a family from a mother’s perspective.
From dropping out of high school, to cross-country ventures, from one job to the next, the changes in Ben causes his mother to be worried, afraid, sad and angry all in one breath. From the confusion before Ben’s diagnosis to the trial and error to find the right treatment, through the ups and downs along the rocky road to recovery, the reader is almost instantly involved in this struggle, and feeling the desperate fear and pain of the family. Kaye is torn as a mother between her desire to stay involved, and knowing when to let go.
In Ben Behind His Voices, Kaye enthralls you into her family’s story of warning signs, chaos, incarceration, hospitalization, recovery and hope. This is the story of so many families who are affected by mental illness.
It is important to remember that while schizophrenia is a challenging disease; there is hope for normalcy and recovery. Ben and his amazing mother prove it in their story.
Recently I was able to talk with Randye Kaye about her book.
NAMI: Why did you decide to write Ben Behind His Voices?
Kaye: The story began with NAMI, in a way. My son is now 30. I was a radio personality when these symptoms began to occur, and NAMI really changed my perspective. This book is a love letter to NAMI. One of my main reasons was to increase awareness of NAMI, and one of the best ways to do that is through a story. Because NAMI was so instrumental in becoming educated enough, I wanted to let more people know abut he hope and education NAMI can provide; and how education can empower a family to help their loved one, rather than giving up. Whoever I get the chance to speak to; I always say the most important letters after my name are ‘MRG’, Mother who Refused to Give Up. Because of NAMI, I found the courage and knowledge to help my son.
NAMI Family-to-Family was my favorite part of NAMI. It gave me support, and something concrete I could use—education without judgment. I quickly became a teacher, and then a trainer of teachers.
The reasons for writing it were always there, but finding time was another issue. And actually finding that time was a gift from the universe, in the six-month severance period following my last day at the radio station. I wanted to spread the message of hope and support further than just the people I met through NAMI. I wanted to help health care professions to see things from the family point of view. If the family is educated and empowered, they can be such a powerful ally in recovery. But if not, those families can just give up, or become detrimental to the process because they don’t know how to help.
Every patient or client or case, is a person, who is someone’s son, daughter, spouse, parent, brother, sister, friend; someone who is loved, who has a past— and hopefully a future. I named the book Ben Behind His Voices because I wanted to be clear that this is a person who had a bad stroke of luck because he has an illness. I wanted to spread empathy, offer hope, increase understanding and help others to not feel so alone.
NAMI: Did you worry about the impact sharing your story would have on your family?
Kaye: I really did. It was a risk, but it’s always a risk because no matter how much we tell ourselves that it isn’t our fault and we should be able to be as open about this as other people are about an illness like cancer, I felt that by jumping over that hurdle and being open, we could do some good.
The first person’s permission I had to get was my son’s. He is inching towards some sort of acceptance with his illness, and to respect his journey I always try to partner with him. I told him I couldn’t tell his story, but I am telling the story from my point of view as a mother. He agreed to let me do that, and asked that I change his name for privacy purposes, which I did. He actually chose the name Ben himself, and also gave me permission to use his poetry and some of his writings.
My son is a sensitive soul, and he doesn’t lash out, so I try to keep a mother’s eye on his feelings. When the books came from the publisher, I knew that this would finally seem real, and watched for his reaction. He just smiled and said, “cool mom.” Two days before the book launch Ben said he wanted to come to the event; that he wanted to “support me.” This was a surprise, but of course I was delighted that he wanted to be there—but I was also a bit wary.
The book launch was a reception and book-reading, so I asked Ben how he felt about that. I chose passages carefully, since he was in the audience and had never heard some of them before. He asked me to state a disclaimer that, “If Ben were here, he would want me to remind you (the audience) that he may have a different version of this story; this is from the mothers point of view.” This way, the people who didn’t know him did not know he was there, and the people who do know him, already love him and know his story. This worked like a charm - and the evening went very well for us all!
NAMI: What advice would you give another parent in a similar situation?
Kaye: Find your NAMI Affiliate. If you don’t resonate with your local affiliate, find another one that you do feel comfortable with. NAMI is a great place to turn for support and education. For professionals, hand out NAMI brochures to family members—keep them on hand in your office.
I also read memoirs; others’ stories helped me so much.
Get as much education as you can. The more you know the better. An educated family is an empowered family. You will stop trying to fix things that can’t yet be fixed; it will teach you patience. When you get support and education, it’s easier to get to a place of acceptance. You have to build your way to acceptance.
Use communication skills. The most powerful thing I learned in NAMI Family-to-Family was how to talk to my son without making it worse. I learned to set limits, and I safeguarded those limits. Families can feel stripped of power, and you have to realize what you are and are not willing to do and tolerate. Change what you can, and not trying to change what you can’t. Limits are part of self-care. Taking care of yourself and do what you need to do, so you are not feeling resentful when you are offering help to a loved one. Understanding my needs helps my son feel less resentful of needing my help. Understand that it isn’t your loved ones fault.
NAMI: You discuss some really painful and difficult times in your story. What was the key thing that got you through those struggles?
Kaye: These two mantras helped me a tremendous amount. They remind me to stay grateful in the moment, and stay in a place of acceptance and hope: It is what it is, now what? and Whatever happens, we’ll handle it somehow.
We all know recovery is like a game of Chutes and Ladders. It helped me to remember that you can’t jump straight to acceptance, but eventually you must work from that place. Whenever there is a crisis or setback, I allow myself my own pain. I allowed myself to cry when I needed to cry, and allowed myself the process. And I allowed my family their process. Allow yourself the grief and pain.
I also read When Bad Things Happen to Good People. Somewhere deep inside I think maybe there is a reason for this, but I sure don’t know what it is. So I don’t look for the meaning.
But I do believe that bad stuff happens to good people, and I don’t know why. No, it’s not fair, and it’s not my job to figure out why. But I have a journey and so does my son. But I know there is some plan, somewhere, that I have no access to, and Ben’s life has a journey and I have to allow him that journey. However, he was thrown together with this family in this life so that we can be some support to him along his path, and vice versa.
A railing doesn’t push, doesn’t pull, it’s just there when you need it.
There is a huge difference between hope, dreams and expectations.
Dreams are safe because you haven’t taken any steps to prove them wrong. Hope is a little more concrete; you can take some action steps towards it, and you have seen the possibilities of hope. But you don’t expect specific dreams, or you might feel your life is falling short somehow. Just dream, hope, and know you’ll be okay no matter what. Expectation can lead to disappointment if you pin your happiness on whether or not certain things happen - but we can dram, we can hope, and in working towards those hopes we find our happiness, even if things come out not exactly as planned. Hopes must have some flexibility! We take steps to hope for the best, but also know we have the ability to handle whatever happens. I don’t dwell on the negative—I am toward appreciation of the positive. I like to be in the present and be grateful to be here.
NAMI: Any final thoughts?
Kaye: Part of the effect I want the book to have, is I want to put one human face behind the symptoms of mental illness, in the hope that professionals realize, that every person they come across is a person with a past, with strengths, and is a human being with an illness—and to treat the whole person.
We must continue to advocate for early detection, better research, and fair media coverage for people living with mental illness. Services cannot be cut; we must fund them, make them available, improve them—so that people with mental illness can reclaim their futures, not be lost in a system that too often puts them out on the streets, or in jail.
I advocate for increased research and treatment, for strength-based support, for stomping out stigma, for insurance party, for more railings in the stairwell. I advocate for my son Ben, and for others like him. I advocate for possibility and support, not limitation and hopelessness. See the worth!