Ben Behind His Voices

Diagnosis at last: Grief and Relief

Randye Kaye — Wed, 16 May 2012 21:34:52 +0000

It’s Mental Health Awareness Day, and HealthyPlace.com (host of my Mental Illness In the Family Blog, and lots of great info, encouraged me to do a video post for the “blog party” -

So here it is – one minute about the “moment of truth” when a diagnosis is finally shared. So many emotions.

Living with Schizophrenia: Your Family is not Alone

Randye Kaye — Tue, 15 May 2012 17:11:54 +0000

Best Mothers’ Day gift ever: the Miracle of Ordinary. Just a simple family dinner for 5, out on the deck, with everyone trying hard to do it all without my help (and me trying hard to stay out of the preparations, not always successfully but close!) Cute. Sweet. In a MasterCard word: Priceless

Why? So much to be grateful for – happy marriages for both me and my daughter, the end of school finals (i.e. stress) for my son-in-law and son, sunshine, food on the table, etc. – and another Mothers’ Day with my son with us instead of in the hospital.

In the past few weeks, I’ve met many amazing Moms. One of them is Claire, whose daughter Rebecca also lives with schizophrenia, as does my son Ben. Their story is included in the documentary Living with Schizophrenia (click to view it for free), which is one of Hope and Recovery – when treatment includes the right medications, love of family and community, and healthcare providers who treat the human being, not just the illness, in a partnership of open communication.

I had the privilege of meeting Rebecca and Claire at the National Council Conference last month in Chicago, along with Dr. Rebecca Roma (also in the film). All of these wonderful women inspire me, and I hope they will inspire you too.

Rebecca, Claire, Randye at National Council

Claire is currently reading Ben Behind His Voices, and says:

I am delighting in your book even more now that I know the author! Your book is amazing… I like the boxes with information in each chapter…I applaud all your hard work to get this book written. It really is a great resource .

Thank you! and thanks to all who have shared their stories with me, and the world, so that no one has to feel alone.

Also in the film, also an inspiration, are Josh and his family, Ashley, and Dr. Xavier Amador, the author of I am Not Sick I Don’t Need Help. Read it if you still think you must “convince” your ill relative that they have an illness before anything can be done. It, and this documentary, may change your mind – and help you to be a partner in a loved one’s recovery journey.

I am a proud M.R.G. (Mother who Refused to Give up). Because of the support, education and inspiration I’ve gotten from people like Claire and Rebecca – and the others in this film – the choice to remain beside my son in his journey has been easier, more hopeful, and more successful.

Resilience: Bouncing Back…Bolder

Randye Kaye — Wed, 02 May 2012 17:15:17 +0000

One of the letters in “SEARCH” – the acronym I created and present re what families need when mental illness strikes (or, really, we all need for most challenges) stands for:

R = Resilience

Families Have Recovery Process Too

I wrote about resilience in an article about happiness called Bouncing Back Bolder -because the way we deal with setbacks can strengthen us. We all have them, of course – but sometimes the road when dealing with mental illness seems particularly full of detours and pitfalls.

So when I was asked to be a guest on Angel Tyree’s radio show, Bouncing Back to Your Brilliance, I figured it was karma! Angel was a terrific, well-informed and empathetic host. You can hear the half-hour show here.

Here is an excerpt from the article, too:

Confession: I don’t really like lemonade all that much. And, I also think that lemons have their place in this world without being sweetened and liquefied: to balance the strong flavor of swordfish, add tang to a glass of water, keep apples from turning brown.

This much, though, I know is true: if life hands you lemons, and you choose to make lemonade, you have the supply the sugar yourself.

Stop Stigma Now!: It May Save a Life

Randye Kaye — Fri, 27 Apr 2012 15:42:18 +0000

Last night I had the pleasure of being the keynote speaker for the Kennedy Center Inc Annual meeting. The theme was inspiring:

Create Hope, Celebrate Potential.

The Kennedy Center staff does so much to do just that, from educational programs to support services

Decorated books! for the centerpieces

like job coaching, to residential programs and more, helping families when hopes and dreams have to be adjusted due to a disability diagnosis – in utero, at birth, because of an accident, or (as in our case) as a child develops.

We cry our tears; then, if we’re lucky and well-guided, we wipe our eyes, pick up the pieces, educate ourselves, find a new community, get some support and new knowledge, and learn to understand our “new normal.” Then we adjust. And accept. And, eventually, appreciate the joys in this “new normal.”

None of this happens overnight. It takes time (and the “SEARCH” elements I talk about – support, education, acceptance, resilience, communication, and hope/humor) to get to that new place.

And it takes time and patience.

But none of this - none of it – can happen without first addressing the problem of stigma. Especially where mental illness is concerned – because we can’t always bring ourselves to see it, visually or emotionally.

Kenton Robinson of the Eastern Regional Mental Health Board wrote a beautiful, heartfelt piece about his experience with family stigma that almost had tragic results for one of his former 7th grade students:

he says:

Depression, bipolar disorder and schizophrenia are illnesses, just as diabetes or heart disease are illnesses, but they are still viewed by many as the victims’ fault. That stigma makes people ashamed and afraid, and it prevents many from getting the treatment they need.

I responded:

Shame was part of our initial reaction until we learned better, through NAMI (I became a family-to-family educator and trainer) and through hearing stories of others. I wrote our book hoping it might save a family as ours was saved – and, possibly, save a life.

Thank you for a wonderful article!

Mental Health Awareness Month, Mothers’ Day, and Memoir Readers

Randye Kaye — Tue, 24 Apr 2012 17:00:06 +0000

May is days away – bringing both Mothers’ Day and Mental Health Awareness Month. This has me thinking about wonderful readers who have taken the time to share their thoughts with me – and not only those who are affected by mental illness in their families (one in four families, btw- we are “the 25%”), but also those who see Ben Behind His Voices as, to quote the Library Journal review, “a darn good read for memoir fans.”

Sure, I wrote the book to open eyes to the issues surrounding mental illness and the family, and to help others going through it – but under it all, it’s also the story of a mother (and a sister) who refused to give up on someone they love. I don’t have to have

a gift from Ben, Mothers Day 2011

shoveled coal to appreciate Angela’s Ashes. And I’m glad that many family members in “the 75%” not directly affected by mental illness in a loved one are still writing to say how much the story of family love and strength means to them.

Here are some recent comments. Thank you!!!

Randye Kaye has touched my heart with this book. It’s not just about battling a disease, it’s about a mother’s love for her family and her relentless crusade to help her children to be the best that they can regardless of what obstacles in life are placed in their way. Randye brings you into her family circle and writes with such emotion that you feel that you are experiencing every high and low with her. It’s a story of courage, of never giving up, of hope. It is a story of inspiration that leaves you feeling that although life does not always turn out the way you hope, it can be ok. This book is not just for families of children battling mental illness, it’s for all parents who face different challenges with their children. I could not put the book down once I started it. Such an incredible story. I hope there is a sequel so we can see how Ben is coping a few years from now. Great book for all, I would highly recommend reading it. – ESM, latest customer review on Amazon

It isn’t often that I spend a little more than a day finishing a book. I usually have 2 or 3 books going at once and I finish them as the spirit moves me…I was truly moved by your story. – MS, Chicago reader

What strikes me most about the story is the reserve of human endurance and the depths of love and resilience of the family…And Ben: how courageous he is and what it takes to manage the disorder comes through on the pages. Randye Kaye’s resilience, determination and courage are inspiring to anyone who must go down this difficult road of schizophrenia or any other chronic illness…this is a painful situation and yet the reader is left hopeful because of the power of hope and love. It shows what it means to be human. - book club reader, Syracuse NY

What can you say about a book that chronicles the descent of a sweet child into mental illness? This is an excellent book, which everyone should read. Mental illness — and especially schizophrenia — is so stigmatized that people are afraid of those who are ill. It is sad to watch, with the author, as her sweet, bright son deteriorates before her eyes, and the years of seeking it took before someone correctly diagnosed his disease. And her reactions — not wanting to be with him, but wanting to protect him; hating him while loving him; missing the beautiful child he once was — are heartbreaking. I highly recommend this book. - Laura Nichols, Goodreads reviewer

A truly inspiring story of the struggle against mental illness has recently come to my attention. Written by the mother of an individual suffering from Schizophrenia, “Ben Behind His Voices” is a truly illuminating tale of one family’s long term experience with the various trials and tribulations that go hand-in-hand with mental disorders. – from Max Ingram, blogger at Runic Realities:

Award Winning Blog

Randye Kaye — Wed, 18 Apr 2012 16:51:25 +0000

Thanks for the Award! Check out Jennifer's Blog

Thanks to Jenifer Robinson, author of the blog Suicidal No More: Choosing to Live with Schizoaffective Disorder , for giving the I Choose to Live award to this Ben Behind His Voices blog!

Jennifer says:

Ben Behind His Voices is a parents’ blog about their son’s Schizophrenia. They are authors of the book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope. They post timely, relevant articles, updates on their advocacy work, and how their son is doing.

“Thank you for the work you are doing to raise awareness about Schizophrenia and other mental illnesses.”

Thanks, Jennifer!

Richard Dreyfuss on Living with Mental Illness

Randye Kaye — Mon, 09 Apr 2012 16:04:30 +0000

Bravo, Richard Dreyfuss. Not only one of the best actors of our time, but he is speaking openly about his experience with bipolar. As reported last week in the Herald Tribune in this article by Barbara Peters Smith, Richard recently appeared in Sarasota, FL to speak on “Living With Mental Illness” for the Mental Health Community Centers. The event was sponsored by the Sarasota Memorial Healthcare Foundation.

In the accompanying interview, Richard says,

Dreyfuss:On an airplane the Delta magazine had an article about corporate executive depression. It said, “If you have any four of the next 14 …” and I had all 14.I got off the plane and called my psychiatrist and said, “we have to kick this into high gear. We have to start and get a solution. If we don’t, there really is no reason for me to go on.”

Herald-Tribune: About what time was this?

Dreyfuss: This was in the middle ‘90s. He said the wisest thing I’d ever heard. He said, “Richard, somewhere in your head is a faucet that is dripping either too quickly or too slowly, and we can help you.” I can’t tell you the relief that lifted off my shoulders at that moment.

He goes on to share a lot of his experience, and his feelings about how the disorder has affected his life – from birth. Richard has joined the ranks of those of us – people affected by mental illness as well as those who love them – who refuse to feel shame or blame because of a physical illness of the brain. Someday, mental illness will receive the same respect (especially in research and availability of treatment and services) as other disorders. Each story, we hope, bring us closer to replacing stigma with understanding and a vow to improve the way things are.

Here is the comment I left on the site:

Thank you Richard, for sharing so honestly and openly. The fact that the medication that helped you the most was discontinued due to “lack of profit” is appalling. As the mother of a son who has schizophrenia (and I am so very proud of both my children, too!) I can tell you that while his medications are far from perfect, it is that certain combination that has enabled him to stabilize enough to become an A college student and a valued part-time worker. As for our love? He always had that – but it is easier when psychosis is kept at bay. The right medication can begin the process. Add love, support, purpose, community and understanding instead of stigma, and we’ve got a chance at realizing potential. I love your work – always have. And now I can appreciate what you may be going through as a person. Thanks for telling.
best, Randye Kaye
author of “Ben Behind His Voices:One Family’s Journey from the Chaos of Schizophrenia to Hope”

Interview on “Best People Ever” with Deb Scott

Randye Kaye — Wed, 04 Apr 2012 21:18:24 +0000

Deb Scott, author of The Sky is Green and the Grass is Blue, interviews “the best people ever” – in fact, it’s the name of her radio show. Had the privilege of talking with Deb yesterday for about 30 minutes – here is the result!

(If it takes too long to load, just go to Best People Ever Show – Randye Kaye)

Listen to internet radio with Best People We Know on Blog Talk Radio

Book Reviews from the Field: Psychologist, Psych Nurses

Randye Kaye — Sun, 01 Apr 2012 20:21:16 +0000

Thanks to Psych Central for adding Ben Behind His Voices to the excellent titles in their Mental Health Library. I’m proud to be listed here!

Readers who also happen to be healthcare providers (psychiatrists, nurses, psychologists, social workers, etc.) give extra hope that the messages in our story (greater empathy, the human face of mental illness, reduction of stigma, need for early detection, more integrated treatment options, new research, increased services, open communication and teamwork in recovery) will continue to branch out to others. Thank you!

From Nicholette Leanza, M.Ed, PCC-S – review on Psych Central

“Ben Behind His Voices is an inspirational story about a family’s experience with schizophrenia… This book is a good resource for individuals with schizophrenia and their families. It also serves as a strong reminder to mental health professionals to treat individuals affected with the illness with dignity and compassion…

She carries the reader along and we, in turn, can feel her pain to find the answers to her son’s issues and problems. She begins some of her chapters with excerpts from Ben’s writings, which provide the reader some insight into his perspective on his struggles:

I am most of my voices

Many different selves

I don’t need to give in to what I fear

Just give in to the fact that I’m afraid.

~ Ben, c. 2001″

Here, Psychiatric Nurse Charmaine Grace shares her perspective on her blogpost “I Love My Job”

“This book is a must-read for anyone working in the mental health field, a family member of someone suffering from a mental illness, or any person who is diagnosed. One very important lesson I learned from this book is that there is so much more to that person behind the hospital room door than a simple diagnosis.

Now, whenever I see a patient, I try to recall this memoir and think about the process of how this person got into a crisis, how afraid he or she may have been, and how afraid his or her family may have been. When I see a family member, I always try to remember to ask, “How are you feeling?” to let him or her know that this is not an easy process, and that his or her health (physical and psychological) is very important to me.”

Thanks to you both for reading the book, sharing your thoughts, and for your work in this field.

I am most of my voices

Many different selves

I don’t need to give in to what I fear

Just give in to the fact that I’m afraid.

~ Ben, c. 2001

CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

Randye Kaye — Sat, 31 Mar 2012 20:58:31 +0000

COME AND CELEBRATE! I am thrilled to be one of the speakers at this event, but the real stars are the young adults touched by mental illness, and their art and writings. After that, I will meet and speak with member of Families Anonymous in Connecticut. Sharing is healing.

VOICES ART EXHIBIT SEEKS TO RAISE AWARENESS AND CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

The National Alliance on Mental Illnesses of Connecticut (NAMI-CT) and Young Audiences of Connecticut/An Affiliate of VSA join hands to raise awareness and reduce the stigma associated with childhood onset mental illness through the art exhibit, Voices: The Art of Children, Adolescents and Young Adults Touched by Mental Illness. The exhibit features the work of more than 30 artists between the ages of 8-21, all of whom are either living with or are a family member of a young person living with a mental illness. The Voices exhibit will provide these courageous individuals a venue in which to express their feelings and a window into which others can gain access to their personal lived experience. Several of the youth will be present beside their artwork to share their story of how the illness has been a challenge, as well as an opportunity for personal growth and increased self-understanding.

The exhibit will take place from April 2-13th at the Legislative Office Building, 300 Capital Avenue in Hartford between the hours of 9 a.m.-5 p.m. Monday-Friday.

The Artist Reception will be held on Tuesday evening, April 3rd from 5-7 p.m. and will feature several speakers including Randye Kaye- actress and author of the book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope and Deborah Mendoza and Jana Pietrzyk- two Voices artists and inspiring advocates.

For additional information on either the Voices exhibit or reception, please contact Ann Nelson, NAMI-CT, at either 203-927-1541 or familyresearch@namict.org.