Category Archives: stigma

Depression out of the Closet: The Boss too

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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.

Surviving Stigma: Families Speak Out

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This training video for NAMI, the National Alliance on Mental Illness, is used to help family members of those with mental illness cope with stigma.

This was produced by Danolas Productions, and I was proud to be part of it. Families who survive stigma can be more helpful partners in recovery (and if the stars align just right…)
View the trailer below.

Schizophrenia and “Perception”: Will it be Accurate?

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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.

Stop Stigma Now!: It May Save a Life

Ben Behind His Voices Events and Updates, mental health and community, resources and reading, stigma, , , , , , ,

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!

Richard Dreyfuss on Living with Mental Illness

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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”

“Shut Up About Your Perfect Kid”: Book Review

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Gina Gallagher is co-author with her sister Patricia Konjoian of Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Kids.  I first saw this book at NAMI’s 2011 National Convention in Chicago, and found it full of useful and realistic information to go with the catchy title.

The authors also write a Shut Up About Your Perfect Kid blog , and I highly recommend that as well.

Since Ben Behind His Voices will be at this year’s NAMI Convention in Seattle, I hope to find Shut Up About Your Perfect Kid available there once again, right along with mine.  I could have used this book when Ben was going through frightening changes that shook my parenting confidence to the core.

Here are some things not to say, according to the authors (details in their book and blog):

1) “I don’t know how you do it.“

2) “Give me your kid for a week and I’ll whip him in to shape.”

3) “You poor thing.”

4) “I’m so lucky, my kids are healthy.“

5) “If that were my kid, he’d be different.”

As the mother of an “imperfect kid” whose imperfection happens to be gradual-onset schizophrenia which began in his mid-teens, I have been on both sides of the fence; I went from proud Mom (though I like to think I didn’t brag) to confused/embarrassed/guilty Mom, and back to proud Mom with a new set of criteria for my pride.  If you need a friendly, realistic and exceptionally empathetic and informative guide to how to maneuver your way through the world of “Perfect Families”, I highly recommend this book. Check it out!

Mental Health, Community and Potential:The Clubhouse Model

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Last week NAMI-CT’s Fairfield Affiliate hosted an informative and inspiring Legislative Social – over 100 in attendance, including about a dozen state legislators, all there to hear about programs and services that help those affected by mental illness live fulfilling, purposeful, hopeful lives. I wrote about it here as well, on my Mental Illness in the Family blog.

My point there, as expressed in my comments at the meeting: don’t let the success of these programs and the amazing young adults participating in them lull you into a false sense of security that continued funding is not necessary. It is. Oh, it is. In this climate of budget cuts for the look of the bottom line, never forget that treated mental illness is always way less expensive than the cost – financial and emotional – of untreated mental illness. Keep funding what works!

And here is something that works: the International Clubhouse model. Fountain House in NYC, Laurel House in Stamford CT, Shore Clubhouse in NJ, many others, and here an example from Bridge House in Bridgeport CT. This video was written, produced and voiced by the young adult members at Bridge House.

Possibility, Respect, Understanding. Here is the video. Enjoy.

Open Hearts and Mental Illness: View from both sides

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There is so much potential, creativity, intelligence, and a wealth of new perspectives to be gained by being open to those affected by mental illness. One wonderful example is the aptly named Open Hearts Gallery in South Carolina.

Their mission?

One Open Hearts Work

THE OPEN HEARTS GALLERY IS A DYNAMIC GALLERY FEATURING THE TALENTED ARTWORK OF PEOPLE WHO LIVE WITH OR HAVE RECOVERED FROM MENTAL ILLNESS.  ART IS A POWERFUL REPRESENTATION OF THE PERSON WITHIN – HIS OR HER PAIN, RECOVERY, AND TRIUMPH.  THE GALLERY SERVES AS A BRIDGE TO COMBAT STIGMA AND AS A REMINDER OF HOW RESILIENT AND SIMILAR WE ALL ARE.

Check it out. You can also order prints by going to their “contact” page.

 

Can we open our hearts to those with mental illness? Of course, as the mother of a wonderful young man who also has schizophrenia, I am going to say yes – still, as you know if you have read Ben Behind His Voices, there were times when I felt I had to harden that heart in order to survive emotionally. The journey to return to an open heart toward Ben was not without challenges; my book pays homage to the obstacles as well as to the results of the lessons of love, respect, and possibility that we eventually learned.

But, still – there is always another view. I recently has a conversation with someone whose heart was shaped by her own experience as parenting Ben has shaped mine. In his case, he had been stalked by someone whose mental illness was allowed to go untreated. Untreated! That can be the difference between love and fear, between open hearts and a mind forever closed. And I can’t say I “blame” him. How could I?  (for more information about “Eliminating Barriers to the Treatment of Mental Illness”, see the excellent website Treatment Advocacy Center.)

So, while most react to my story with gratitude, this person was cold to the idea of someone with schizophrenia being vulnerable, lovable, capable, and worthy of respect. I hope, perhaps, that hearing our story might loosen his heart just a bit. Stories, and art, can help do that.

Courage to Speak: Empowerment

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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.

Schizophrenia and Family: Walking the Tightrope of Recovery

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Recovery in mental illness is possible, yes – but is often a tightrope walk for all involved: consumers, family, friends, providers.  To paraphrase Willy Loman in Death of a Salesman, “Respect must be paid.”

This is an excerpt from today’s radio interview with Ray Andrewsen of WQUN AM in Hamden, CT, where he asks me about our family experience as schizophrenia developed in my son Ben.

Next Thursday, June 9, I’m honored to be the keynote speaker for Fellowship Place in New Haven, CT, one of many organizations providing much-needed support and community for those with mental illness. .

Eighth Annual Doctor Albert J. Solnit Memorial Lecture

Advance ticket purchase is required. Tickets are $25.00 each. To purchase tickets, please click on the link on the left or call Melissa Holroyd at 203-401-4227 x111. All proceeds to benefit housing and support services to adults who suffer from chronic mental illness.

more info: Hope to see you there if you can make it!

Fellowship Place to host our 8th Annual Dr. Albert J. Solnit Memorial Lecture: a discussion with  Author Randye Kaye, Thursday June 9, 2011 at 7:00pm, at the Whitney Humanities Center Auditorium of Yale University, 53 Wall Street, New Haven.
Join us for a conversation with Randye Kaye, based on her book “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”, to be published by Rowman and Littlefield in September 2011.  Kaye will share with the audience her experiences with her son who suffers from schizophrenia, how mental Illness affects the whole family and how they helped guide him on his recovery journey as he went from 7 hospitalizations to now 4 semesters on the Deans List at his school.
Kaye humanizes the experience of schizophrenia by including Ben’s point of view, through his poetry and other writings, and pays tribute to the courage of anyone who suffers with mental illness
Following the Author’s presentation, Fellowship will host a panel discussion with the audience and a coffee reception. The Panel will include:

  • Daniel M. Koenigsberg, MD, Former Chairman, Dept. of Psychiatry, Hospital of St. Raphael, Associate Clinical Professor, Yale Medical School
  • Selby Jacobs MD, MPH, Former Medical Director, CT Mental Health Center, Professor of Psychiatry, Yale Medical School
  • Allan Atherton: Treasurer, National Alliance on Mental Illness (NAMI) of Elm City, Past President NAMI/CT, Co-Coordinator, NAMI CT Sharing Hope Initiative
  • Randye Kaye, Author: ”Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”, NAMI Family-to-Family educator, Radio broadcaster: NPR.