Ben Behind His Voices Blog
One Family’s Journey from the Chaos of Schizophrenia to Hope
NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)
Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.
a preview of awesome DVD on effects on family: The National Alliance on Mental Illness: In Our Own Voice Family Companion
This is a preview of a DVD associated with a research project. The full DVD is meant to be presented in its entirety along with a program, part of a NAMI-CT collaboration with NIMH, the Mount Sinai School of Medicine and the Institute of Living. If anyone would like to see the video with a presentation, Ann Nelson is happy to arrange that for family members or providers. NAMI-CT at 203-927-1541 or familyresearch@namict.org.
No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI's Family-to-Family Course
Where truth, support, and hope began: NAMI's Family-to-Family Course
Now:
Ben made the Dean's List again! The letter from our local community college confirms his status and adds, "It is a a very worthwhile accomplishment to have become one of our best students." For the first time in over a decade, Ben actually cares about his grades; there was a time he considered report cards a government plot to control him. Ten years ago, he was a high school dropout, refusing to discuss his future plans, wandering through our town streets because he "didn't like the stupid rules at home." Sometimes, then, he slept in the park. My son, homeless and hopeless. His family: confused, devastated, always at our wits' end.
Recovery takes time - and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family. This program - one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.
It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not "stubborn", or "going through a tough adolesence" - he was ill, and it wasn't his fault. What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions.
I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours. For free. Still, so many families don't even know what it is. I urge you to find out. Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate. Click on "education" and there you are.
Find NAMI. It's something you can do for yourself - -RK
Excerpt from Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)
In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.
I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.
I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.
I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.
Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact - that proven, medical fact - is a major hurdle for many family members to accept, for it means two contrasting things: one - that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.
With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.
Posted by Randye Kaye at 7:14 PM
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Labels: F2F, Family-to-Family, mental health, mental illness, NAMI, parenting, Randye Kaye, schizophrenia, stigma
3 comments:
glory said...
Randye, your blog is wonderful. It'll be a lifeline to families challenged by schizophrenia.
Randye Kaye said...
thank you! that is the hope -
Logicmaven said...
Trying to understand it all. Things were looking up. My boy seemed to be doing much better -- much clearer, much more in focus. I started to wonder if it was all in MY head; after all, he hasn't had a formal diagnosis in almost ten years. It seemed like things were moving toward "normal." We spent some wonderful days together laughing, visiting the MoMA, remembering how alike we are and forgetting how different. I tried to gently push him toward mental health care -- he refused.Then he took off again. He's back in the city, "staying with friends." He calls me at night to tell me he's cold, to complain about not being able to get seen at the methadone clinic, to tell me he's hungry but he's not coming home.I don't know how I would survive without the support of friends.Thanks, Randye, for being there. Thanks for telling me about NAMI. Your words help so much.
Family to Family
Back to teaching NAMI's wonderful course, Family-to-Family. As always, the love and confusion, the bravery and frustrations of these families amaze me.
Yesterday I taught an acting class; one student, wheelchair-bound, was accompanied by his father who took notes, gave physical aid and emotional support. Parents who are "awarded" the responsibility of a child with a disability, whether physical or mental, face many of the same challenges. These parents will not be able to look ahead to the day when their child is totally independent. There is no clearly defined light at the end of any parenting tunnel ...but when your child is disabled, that light is dimmed even more.
Still, the love is evident.
My child, who is 27, can at least walk by himself; he can, when balanced by his treatment, do many things without me. Sure, we still drive him to saxophone lessons, supplement his meager income, take him grocery shopping. He may never be totally on his own. But there is much to be grateful for.
A terrific novel, exploring the family role when there is disability, is Jodi Picoult's Handle with Care. Love is complex, unpredictable, immenseley valuable, and not always easy.
No Casseroles for Schizophrenia
If you are dealing with a mental illness in your family, this blog's for you.
My memoir, Ben Behind His Voices:One Family's Journey through Schizophrenia to a New Normal (formerly titled No Casseroles for Schizophrenia) is represented by Claire Gerus, cgerus@comcast.net. I am a NAMI Family-to-Family teacher and trainer in Connecticut, and professional speaker. My son, Ben, is 26 years old and was diagnosed with a severe case of paranoid schizophrenia about 5 years ago, after many years of confusion for our family during the gradual onset phase. The purpose of the book is to (a) tell the story of Ben's onset, crisis and recovery - especially recovery. All is not lost. Ben's life is worth living, he is worth loving; (b) get the subject - and stigma - out of the closet and into the open air where it can be discussed and, eventually, accepted; (c) provide hope, and some guidelines, for families; (d) educate providers as to what the family experiences when mental illness strikes - increase empathy and respect for the family as well as the person who has the illness. Oh, yes, and attract the right publisher to my literary agent, who believes in this book as much as I do.
Randye Kaye, rep. by Claire Gerus,
cgerus@comcast.net.
