Tag Archives: stigma

What Else is New?: Research, Reviews, Presentations

Quick Updates: (1,2,3…)

1. Ben Behind His Voices Comes to New York City!

Venture House
Reserve and Come to Free Event!

 

 

Venture House, Inc. sponsoring this awareness raiser – hope to see you there!

On September 20th, 6 PM (reception) 6:30 PM (Book Reading and Discussion) –

Zucker Hillside Hospital – 266th St. and 76th Ave

Glen Oaks, NY 11104

reserve your (free) seat at events@venturehouse.org

(Venture House is a clubhouse program
located in Jamaica, New York City that provides services to adults with mental illnesses)

 

2. 4HealingHearts Radio show – Conversation about Mental Health, Hope, Info, and Empathy – 8/3/12

have a listen here! or here’s the link to download it

Listen to internet radio with 4healinghearts on Blog Talk Radio

3. More BBHV Reader Reviews: Thanks!

Thanks to the BBHV Readers on Goodreads for rating and reviews, including these:
Kathy says: What an amazing book! Very informative, but above all, the love the author has for her son, Ben, shines through – even when Ben is feeling his worst… I highly recommend this book to anyone, if only to learn more about mental illness & how it changes the life of the person who has it & the lives of his family & friends.

Leslie: “Wow. So humane. So moving. This is going to be the first book I recommend to therapy patients and families dealing with schizophrenia. ”

btw, Goodreads is a terrific site for those of us who love to read. Check it out!

Depression out of the Closet: The Boss too

springsteenAdd Bruce Springsteen to the list of celebrities willing to talk about their mental issues.

Springsteen talks about his lifelong battles with depression in a 16,000-word New Yorker profile hitting the stands this week.

Every time someone in the public eye is willing to talk about mental illness, the door opens to acceptance just a bit more, and stigma is dealt a blow.

Ben and I are trying to do the same thing with our  book. This week I was thrilled to present “Listen Up! Hearing the Family’s Perspective on Illness ” as Interdisciplinary Grand Rounds at Bridgeport Hospital, and honored to receive this feedback:

“I truly appreciated your candor, your humor, and your heart in speaking on this topic. I’d like to think I pride myself on empathy and compassion with all my patients, but I know after hearing you speak, I will double my efforts, all around, no matter the condition.  Thanks again for a really worth while and inspiring talk.”

To touch another person like that – well, that’s the reason I wrote the book and speak out. Thank you.

Yes, right now it is mostly my crusade as Ben’s Mom – but someday I hope that Ben will speak out too. I see signs of acceptance in him, but I know he is not ready to say, in public, that he has schizophrenia. That’s okay. I will take what we’ve got, and I know what it takes. Patience. Understanding. Love. And some luck too.

Meanwhile – Thanks, Boss, for your courage and honesty.  You’ve kicked the door open another inch.

Schizophrenia and “Perception”: Will it be Accurate?

Tonight TNT unveils a new series called “Perception” , in which Eric McCormack plays a brilliant neuroscientist with a full-blown case of schizophrenia.

According to the NY Times, here is the premise:

Colorful characters that only Pierce can see pop up to help him solve murder cases he consults on for his spunky F.B.I. buddy, played by Rachael Leigh Cook. These apparitions badger Pierce with what appear to be non sequiturs and useless information until the last 10 minutes of an episode, when the light bulb goes on, and the murderer is identified.

“Perception” and Mental Illness Stigma

Perception
Eric McCormack plays a neuroscientist in “Perception” on TNT. - JanThijs/TNT

The review goes on to say that this is “TV-Fantasy schizophrenia” – so what does that mean? The hallucinations are useful? Cute? Just a manageable feature of a slightly-eccentric personality?

Will the fictional Daniel Pierce take meds? Will he have had any hospitalizations in his past? Does his family stick with him? Does he have friends? Is he stigmatized at all by his illness?

Will this show help spread misconceptions about schizophrenia as a cute illness, handy for solving crimes, rather than an acute illness?

We will have to wait and see. I’m taping it tonight. I’ve suggested to Ben that he watch it too, but I can see that the idea made him uncomfortable. So that, too, will have to wait.

Book Tour Continues: Trains, Planes, Automobiles

Catching a train to Boston today, then a drive to Marlborough,Massachusetts to participate in the
Parent / Professional Advocacy League (PPAL) 2nd Annual Conference & Celebration as keynote speaker, then a car to Logan Intl airport and a plane to Los Angeles for a US Psych Congress regional event. Presenting about partnering for best recovery outcomes in mental illness by sharing our story as told in the book – and in the year since its publication.

PPAL conferneceAfter a book-signing, it’s back on the plane home to Ben and the rest of the family. After one day together, I drive back to the Boston area to speak with pharmaceutical reps about how more medication options can keep hope alive. Then home, then back to the airport Wednesday – this time to Seattle, to present with Susan Inman, author of After Her Brain Broke, at the NAMI National Convention.

So many are working so hard to increase understanding, reduce stigma, foster respect, advocate for the right to mental illness treatment and better research in the field.  I am so grateful for the opportunities to be one of them. And grateful that the rest of my family is here for Ben, as I travel to hopefully inspire others to become part of recovery in any way they can.

Stop Stigma Now!: It May Save a Life

create hope celebrate potential disability flower

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

ben behind his voices
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!

CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

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.

“A Moment of Clarity”: Art, Bipolar Disorder, and Courage

I’ve just learned about a wonderful new documentary called A Moment of Clarity.  I had a long conversation with its producer, Kevin Cullen, and the hope for  this wonderful movie is the same as for Ben Behind His Voices: To reduce stigma, promote understanding, honor the talent and courage of those with mental health issues by focusing on one human story, and share their family’s experience as well. Check it out! There is a preview on the homepage, and the movie will be available for screenings to interested audiences. Contact Kevin Cullen for more information.

The story, according to the website, is this:

“A Moment of Clarity” is an intimate documentary providing true insight into the world of bipolar disorder told through the life and art of emerging painter Isti Kaldor.(Pronounced: Ish-tea)

Having aspirations of touching people’s lives by attending medical school and becoming a

Moment of Clarity
Isti and His Amazing Art

physician was always his goal. Life however, had other plans. At the age of 19, during his sophomore year of college in Boone, NC, Isti suffered his first manic break and was diagnosed bipolar by the attending psychiatrist at Duke University Hospital. Continue reading “A Moment of Clarity”: Art, Bipolar Disorder, and Courage

PBS AZ Opening Question: “Who is Ben?”

The interview for PBS in Phoenix, AZ last Thursday began with this wide-open question:
Who is Ben?

How to answer? Well –

Downtown Phoenix Palms
different trees, same mental health issues

He’s my son.

He is a sweet, loving, bright, caring, 29-year-old.

And – he has paranoid schizophrenia.

Very importantly, he is being treated for schizophrenia.

 

 

Here’s how I answered this question, and the thought-provoking ones that followed, in this PBS interview on Arizona Horizon with Ted Simons.

In the same state where Jared Lee Loughner just lost his third appeal over forced medications, this is a very important distinction. My son, Ben, is in treatment.  Loughner, who killed six people and wounded former U.S. Rep. Gabrielle Giffords and 12 others in nearby Tucson just over a year ago, did so as a person whose schizophrenia had gone untreated for too long – and with disastrous results.

Here, in the state of Arizona where many still seem in a state of emotional disbelief over what happened in Tucson, the consequences of inadequate care and services for those suffering with mental illness seems even more obvious – and undeniably important.

In three days, I have made the rounds, courtesy of the Arizona Foundation for Behavioral Health (AFBH) and ASU’s Center for Applied Behavioral Health Policy, speaking in a community lecture, two media interviews, and meetings with NAMI as well as university students and educators in the field.

It has been a whirlwind – and I have met so many wonderful people who care about the issues that can make a difference for all of us affected by mental illness: people who have been diagnosed, those who love them, and the community they live in.

I have but one story to tell with full accuracy – our own – but I have heard many more in these few days. I hold tight to the belief that, one story at a time, shared without shame and empowered by education and courage, we can all make a difference in the way services for those with mental illness are funded, and to the laws that need to be passed to increase research, provide resources, and restore dignity and health to those who have been let down by the system that used to help them live a useful, dignified life.

Courage to Speak: Empowerment

The audiobook version of Ben Behind His Voices has its first official review, from Publishers Weekly – and the fact that the book might reach others who prefer to hear their stories told, rather than sit and read them, thrills me as both the author of the words and as the voice talent who narrated them.

When I agreed to voice the project for Spoken Word, Inc. – a fabulous new audiobook publisher with heart, integrity and a mission which includes donating a portions of proceeds to organizations like NAMI– I was concerned that I might be too close to the words to do justice to my own story.  When the audiobook arrived, I avoided listening to it for some time. I had gone from role of author to editor to voice talent and then to production editor; could I now, objectively, play the role of listener?

So when the first audio review included these words, I was both thrilled and relieved:

“This extremely affecting memoir is made more potent by author Randye Kaye’s background as a professional voice actor. Besides providing crisp, brisk narration, Kaye is exceptional at creating a sense of intimacy with listeners. We hear in Kaye’s performance her simmering frustration… her confusion… her motherly concern during Ben’s moments of sudden vulnerability, and her sadness when she realizes that Ben’s schizophrenia will be a permanent aspect of both his life and his family’s.”

“Simmering frustration”…”confusion”…”sadness”…”concern.” Every time I do an author event (as I did last night, focusing on what congregations can do to support families dealing with mental illness) I am reminded that there are thousands of stories like ours, probably millions. People share their experiences, and these feelings seem universal to those of us dealing with mental illness in a loved one.

The thing that always makes me feel as though this book has been worth writing and sharing is when families tell me that reading has changed their attitude about speaking up.  When someone tells me that they decided to stop fearing stigma, let go of the shame that truly has no place in any no-fault illness, and speak out for their family – that propels me to continue speaking, writing, giving voice to our story and hopefully encouraging others to do the same.

Thank you, reader,  for telling me about the effect this book – or audiobook – has had on you. Every time I meet you, or get an e-mail from you, I am encouraged and embraced by your your courage.

Together we can make the difference by putting a human face onto mental illness and refusing to bow to stigma. I hope we continue to empower each other to speak.

Connecticut Style, WTNH: Interview with Jocelyn Maminta

Jocelyn Maminta is a wonderful journalist and talk-show host – and our paths have crossed many times throughout the years. During my years as a radio personality,  speaker and now author, we often appeared together at local events, and I’ve had the privilege of hearing about her personal inspiring project, Caroline’s Room. She is a skilled newswoman, warm and genuine person, and a fellow working Mom.

Today Jocelyn interviewed me for WTNH’s daytime show, Connecticut Style. Thanks to all involved for the chance to share our story and increase awareness of Ben Behind His Voices, as well as the reality and hope it contains.

Ben Behind His Voices: wtnh.com