Stop Stigma Now!: It May Save a Life

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 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.

Decorated books! for the centerpieces

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!

Award Winning Blog

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!

Interview on "Best People Ever" with Deb Scott

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!

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

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 selvesI 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.

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.

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 -

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)andASU'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.

Mental Health Students: Learning from Personal Stories

This entry is a synopsis of a recent post in my "Mental Illness in the Family" blog, where I talk specifically about how mental health nurses have made a difference for Ben, and for our family.

I know from conversations with mental health professionals that they often feel unsatisfied with the fact that they seldom get to see the results of treatment: patients doing better, people in recovery. For mental health nurses, there is no equivalent of the "reunions" that NICU nurses get to see , to witness  the premature infants they'd cared for, now healthy and grown. That is a shame, I think. I wish sometimes that Ben could "visit" the hospital where he got stabilized, to share how well he is doing now. Maybe someday.

Nursing Students at Fairfield University

For now - I feel really proud to have had the privilege of addressing a group of mental health nursing students at Fairfield University in Connecticut. Their professor, Joyce Shea, had heard me speak at the APNA (American Psychiatric Nurses Association) Annual 2011 Conference, and assigned Ben Behind His Voices as required reading for her mental health nursing students.

To my great delight, Ms. Shea shared with me some of her students' reactions to the memoir, and invited me to speak with them about how mental health nurses can make a real difference in the family experience when mental illness results in hospitalization.

The students had to answer some questions after reading the book, and Ms. Shea was kind enough to share their answers with me.

Question #3 was thought-provoking: What would be like to have Ben as a client?

some answers: "a great experience because these people are special and unique...frustrating because he can be stubborn...challenging yet rewarding to see improvements...his illness does not define him..."

Question #4 brought tears to my eyes: What would be like to have Ben as a brother?

some answers: " like most other diseases mental illness is a family disease...emotionally draining, difficult not knowing what would come next...struggle to accept everything...scary not knowing which version of my brother I would be dealing with each day...however Ben is very loving so it would probably also be very rewarding if I could help him..."

Not an easy question, perhaps - but a key to the compassion that helps families so much.

I loved meeting these students, and hearing their commitment to the work they are training to do. I was thrilled to have the chance to humanize not only the patients they will meet in their careers, but their families as well.  Since they had already read my book, the messages only had to be reinforced rather than introduced.

I look forward to similar opportunities in the future. One of my hopes for Ben Behind His Voices is that it will reach the professionals, both practicing and in training, to help them see the human face of the illnesses they will try to treat.  I speak soon at Arizona State, Mount Union, and other venues. Please feel free to contact me if you would like to know more about Ben Behind His Voices as required reading. Thanks!

Art and Advocacy: When Worlds Intertwine

Like so many people I know, I have no short answer when people ask me, "So what do you do?". If given just a few words, I guess I can say "I talk and write for a living", or "I communicate professionally." But, really? I am a serious dabbler - and insatiably curious information-seeker and sharer.

Author, speaker, stage actress, singer, voice talent, audiobook narrator, advocate, TV/film/improvisation performer, drama teacher, Voiceover coach, NAMI educator, ADL diversity trainer, presentations coach,blogger, radio broadcaster, MC --and that's just my work life. You know what I mean - how many roles do you play in one day?  My professional website home page even has four portals to explore. Still, it adds up somehow - like when the bills get paid - and even occasionally makes sense.

When I get the chance to speak to audiences about Ben Behind His Voices, it's a wonderful opportunity to marry a lot of these worlds. Here, in this clip from a recent library appearance in Trumbull, CT, you can hear an excerpt from the book as well as some thoughts on Ben's progress and why understanding and respect are so vital.

Many of these roles layered beautifully when I got the chance as voice talent to narrate the audiobook of Ben Behind His Voices. Strange to step out of  the writer's shoes and slip on those of the narrator...oh, the urge to rewrite as I narrated! But I am thrilled that the end result was so beautifully produced by Spoken Word Inc, received starred reviews, and that we were nominated as "among the best of the best" for Publishers Weekly's 2011 Listen Up Awards! In the "read by author" category, we were in great company: John Lithgow, Jane Lynch, Penn Jillette and Amy Chua (Tiger Mom lady).

OK, so Lithgow won - but still. Can't think of anyone better to lose to. I get the "it's an honor just to nominated" thing now - really. Thanks!

Mental Health, Community and Potential:The Clubhouse Model

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.

Dear Readers: Thanks for your stories

One of the best gifts in any day is finding an unexpected letter or e-mail from someone who has just read Ben Behind His Voices . I treasure these words, and am grateful to you who take the time to share your reactions and stories. These are the best reviews an author can have, especially when they validate the reasons for writing the book in the first place.

A sample from this week's inbox:

"I have just finished reading your book---my first on mental illness---and feel SO enlightened.  It is  well-written, from the heart ...That love, perseverance and hope continue to be greater than the struggle you face /have faced was a key take-away for me.  Thank you for writing this extremely insightful and honest testimony.  The resources at end of the book are an excellent addition."- reader in CT

"I recently met you at the American Psychiatric Nurses Association Conference in California. Your talk was extraordinary and very moving, and I continued to be captivated by your book on the plane home. I will be teaching a group of sophomore nursing students in their Mental Health Nursing class this spring, and have made your book required reading for them over the winter break." - University School of Nursing Professor and Program director

"I have just finished your book.  I read it in its entirety in 2 days...I am still reeling inside from your candid revelations and your unbelievably forthright delivery.  I have to stop typing every once in a while to wipe my tears as I try to put into words what I want to say to you. .. Thank you.  Thank you for having the guts to tell your story, Ben's story, Ali's story and for giving the rest of us hope."- A sibling dealing with mental illness in her sister

Thank you!

Randye

Looking Ahead, Reflecting Back: BBHV 2011, 2012

January 4th already. Happy New Year, 2012! Always a good time to look back - but not for too long. Also an exciting time to preview what's possible, as well as planned,  for the new year.

BBHV spotted at social workers Conference

In our family we do a "year in review" of our own as we approach New Year's Eve, and certainly tops for me in 2011 was the publication of Ben Behind His Voices, hardcover and audiobook, and all the opportunities that has brought with it to reach families, healthcare professionals, and PAMIs ("People Affected by Mental Illness", the best term I can come up with so far) with its story, information and messages. This year I have been privileged to present at the APNA (American Psychiatric Nurses Association) Annual Conference, sign books at the US Psych Congress, attend and do a poster presentation at NAMI's Annual Conference in Chicago, and connect with so many wonderful readers at author talk/book-reading events for NAMI, RJ Julia Bookstore, Barnes and Noble, Written Words, Congregation B'nai Israel in CT, Fellowship Place, Laurel House, and many more (see "News and Events" for details).

Exciting, too have been TV and radio appearances on Fox News,PBS, ConnTV, WTNH's "Connecticut  Style", NPR and more to tell our family's story  and share messages like the need for open communication, early detection, more research, better understanding, increased respect, and the importance of purpose, structure, community and love to the recovery process. The Press Room has links to more of these interviews.

On a more personal level, 2011 brought a summer challenge for us, when Ben's treatment services were cut drastically and he was re-hospitalized for almost six weeks. We faced, once again, the possibility of losing so much of what he had gained.  Thankfully, he has returned to us once again to resume treatment and the progress he has been making in school, work, and family. We remain so grateful for yet another chance, and also aware that there is so much work still to be done to improve treatment, medical advances, and attitudes.

So - what will 2012 bring? For my son and family I hope for stability and the continued miracles of "ordinary" life and growth. As for the book and audiobook, I hope for more chances to speak with audiences and reach readers, on a national and international level. I also have hopes for increased outreach to professionals and future professionals. I have heard from so many readers that this should be "required reading" for students in this field, and am thrilled to have been asked to speak at two universities so far in 2012.

Some of this is already in the works for 2012, and Ben Behind His Voices hits the road to (so far): Washington DC in January, New Haven CT (Yale) in February, Phoenix Arizona in March (AZ State), Chicago in April (National Council), with a  stops in the works for Alabama, California, Seattle, Ohio NYC, Boston and more. As they say, stay tuned for details...here and/or at Mental Illness in the Family award-winning blog at HealthyPlace.com.

Thank you for being such an important part of 2011.  Here's to all that is possible in the New Year!

Randye

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.

Satellite Media Tour: Tales from the Virtual Road

Wow. Last Tuesday, all from the comfort of the Murray Hill Studios in NYC, I had the privilege of appearing all over the country thanks to the magic of Satellite - and a fabulous make-up artist didn't hurt, either.  Here's one interview that aired on Fox News (.com).

Since Peggy Ann couldn't see me at first, she thought I was a "he" at first - a problem my mother tried to solve by spelling my first name with that "e" at the end, ages ago...) - but then, of course, I countered with my own slip-up, calling her Betty Ann. Not on purpose, I swear. After several interviews in a row, the brain tends to freeze a bit like an overworked computer.

This was a fair and neutral interview, although that word "unfortunately" did creep into her medication question. I think I handled it fairly, though. What do you think?

BBHV's Readers react, review, and share

Psychology section, B&N

If getting a memoir from  inside your head to the shelves of Barnes and Noble and the Amazon inventory is like pregnancy, labor, and giving birth, then the process from that point is like raising a child: constant work, many possibilities and rewards, letting go of your baby and letting it find its way in the world. 

Every so often, though, I hear from a reader - someone I have never met face-to-face but who now knows my story in a surprisingly intimate way - and the journey my "baby" is on becomes real to me. These comments from former strangers, now readers, have touched me in so many ways, and have already made all the hard work more than worth it. Thank you for taking the time to write!

from a psychiatrist in Michigan:

" I received your book at a recent conference.  I just finished reading it:  it was amazing - I couldn't put it down! Thank you for the courage to tell your and your son's story - I am sorry you went through all you did until the correct diagnosis was made and Ben rec'd the help he desperately needed.  Your openness and honesty has reminded me again of the frailty of life, but also the hope that there is help.  I have referred many families to NAMI and your book and your commitment to this fine organization has confirmed my trust in their work."

from a mental healthcare provider in Connecticut:

"I just finished your book, and I want to thank you for this beautifully written text.  The love for your son comes through the pages so strongly.  There is not one ounce of blame towards the providers, who often feel helpless as well, yet also want the best for those individuals- and their families- who are facing the challenge of a mental illness."

Jennifer, a student, writes:

"I just finished reading your book.Your last chapter moved me to tears. I'm currently doing an internship at an acute care mental hospital and your book helps me to be optimistic and relate to each patient as a human being. I appreciate the honesty and hope you express in your book which I feel speaks to the struggles that all parents to different extents experience. "

Another Mom shares:

"I read your book this summer on my Kindle, and it really had a powerful impact on me. Your writing was so genuine and heartfelt, and I  have much admiration and respect for you. I appreciate how far you have gone to openly share your story, to take the stigma away from mental illness, to inform families of the resources available, to share the ups and downs of your family's struggle in such an warm, honest manner, and to commit yourself to helping others who are facing similar struggles. You are a truly amazing Mom and your story hit home in a gripping way, giving me much strength."

Keep writing, please - I love to hear from you!

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

The Miracle of Ordinary

"When you've lost the miracle of ordinary, and you get it back, you never forget to be grateful...to say, This is a really good day."

Those are the last thoughts expressed in my recent interview with Mark Herz on WSHU, a Connecticut affiliate of NPR. Listen to the WSHU/NPR interview here ( 4 minutes)

Yes, ordinary can be miraculous. Cooking a dinner together. Driving your child to work. Nagging you son to finish his Shakespeare essay, when only three months ago he was wandering the floor of a psychiatric unit, unable to focus on conversation for more than a moment.

BBHV sighting: Barnes & Noble, Norwalk CT, Psychology face-out next to Jung!

Our tendency as adaptable beings is to adjust to new situations so quickly that we may forget to notice the joys.  Like that first night when you can actually breathe through your nose again after a cold...or the moment the fridge hummed back to life after the power blackout. The first time you see your memoir displayed at the bookstore. Pure joy! But days or hours later we shift our gaze to the next hurdles and may forget to be happy. It only takes a moment to step back and reignite appreciation. I want to remember to do that more often.

Awareness.  And especially this week, which is designated as "Mental Illness Awareness Week." Not just mental illness, but mental health. As I look back on the book launch party on Sept. 20th, the miracle of Ben's attendance at the event, and the support he chose to show, is indeed miraculous to me.  As the next events unfold (more interviews, upcoming appearances - see the news/events page) I hope that while Ben Behind His Voices does spread awareness about mental illness, it will also spread the messages of understanding, respect, hope, and the value of a therapeutic alliance between families, patients and healthcare providers.

And I hope I never forget to value the precious good days that are beautifully ordinary - and that the book helps reignite that spark in its readers.

Official Book Launch, and hope for its messages

Two new e-mails from people - formerly strangers but now BBHV readers - surprise me with their stories.

audiobook CD

One comes forwarded by my audiobook publisher Spoken Word Inc -- "Thank you so much for posting about the book, Ben Behind His Voices.My brother was diagnosed with schizophrenia last year and my whole family doesn't really know how to help. I ordered it for my nook last night and finished it this morning. Absolutely heart wrenching but extremely informative. I am buying a copy for my mom today and think it will help. Thank you again!"

Another comes directly to me: "I want to thank you for changing my life. I read Ben Behind His Voices in a day and a half on my Kindle. My child was diagnosed with schizophrenia four years ago. Our lives were turned upside down. You put my thoughts feelings and words on the pages of your book. You have given me so much hope and insight into my situation. You understand."

My hopes for our story - that it will touch others - are starting to become real. That makes all the hard work feel worthwhile already.

Laurel House sponsors the party tonight

And we've only just begun. Official book launch party tonight, and here I sit in my overalls writing blogposts. So glamorous! In a few minutes I leave to pick Ben up from work - and, after that, he has homework to do. This all sounds so wonderfully normal. After this summer's "symptom reoccurance", I remain especially grate for these ordinary miracles.

And  there's another surprise: Ben has decided he wants to go tonight to the Book Launch Party. Really? I never expected this. "I want to support you, Mom," he says - and I am heartwarmed by this as well as - I admit - a little nervous about it. One week ago, in an interview with Katrina Daniel of Womenetrics,  I said :

Womenetics: What’s your relationship with Ben like now? And, what is Ben’s reaction to this book about his life?
Kaye: In recovery for eight years now, Ben continues to rebuild his life. He has had a few setbacks, described in the book and in my blogs (here and at Healthy Place) but that is often part of the recovery. Right now Ben has a job, is making the dean’s list consistently in college as a part-time student, participates in family activities, and never forgets anyone’s birthday. We love each other a lot, and he loves his sister, new brother-in-law, stepdad, and the rest of our family, and we all get along very well. One of the best signs that Ben’s treatment was working was the fact that we stopped arguing.

(As for his reaction) I’d say “guarded.” Ben gave me permission to write the book, he gave me permission to use his poetry, as long as I changed his name in the book. I also think there is part of him that is proud that his story might help someone else, but right now, like many in his young age group with schizophrenia, he lacks insight into the reality of the illness. In other words, he doesn’t think he is “sick.” But he is really proud of how far he has come, and he credits the fact that he has not used any marijuana for years.

So - how do we handle all this tonight, with Ben's need to stay rather anonymous as well as to support me? Also - which passages do I read out loud? He has only heard some of the book  so far. I have let him totally call the shots as to how much he wants to be involved, and that's as it absolutely should be.  But - will the evening go well for Ben? Will he balk at some of the honesty in my passages?

We'll see. Our family is not unfamiliar with uncertainly. And, of course, it would have been hard to not have Ben there.  I admit I hope that, someday, Ben will share his perspective too - but not one second before he feels he is entirely ready to. That is his call, his journey.  So connected to ours.

Schizophrenia Story: A Life of its Own

it's real! face out in B&N

After six years of writing, rewriting, hoping, polishing, editing, believing, and picking up the pieces more than once - Ben Behind His Voices is real. The official birthday is this Thursday, 9/15/11, but it has been shipped to Amazon customers already and this week I actually saw it at a Barnes & Noble bookstore!

OK, I admit I was looking for it. I was 30 minutes early for a recording session in Norwalk CT, so saw the B&N and thought "hmmm...I wonder?" and went hunting. And there it was. Face out, yet! Featured Title in the Addiction/Recovery section...(really? OK, whatever. I'll take it)

Seeing the book there, for real, was an amazing feeling,  kind of like finally meeting the child you've nurtured in your womb for nine months.  Wow. This was different from receiving my handful of author copies in the mail last month. I knew where those would go. Now, I see that each book will have a life of its own, a life that is now beyond my control. Who will buy these?, I wonder. Who has downloaded it onto their kindle? I've already begin receiving e-mails from readers I have never met.  I got one last night that said, "I want to thank you for changing my life.  I read Ben Behind His Voices in a day and a half on my Kindle...I can't thank you enough for your courage, and for your showing me how to cope and be positive. "  After I read the rest of her e-mail she no longer felt like a stranger. My biggest hope for the book, for the audiobook as well, is that it will, indeed, take on a "life of its own" as any child must - and reach the people who will be touched, comforted, inspired, educated or simply gripped by the story.  I have heard from readers in Canada, the UK, Brazil, and all over the U.S. And we've barely begun the journey.

Watch for the audiobook, coming this week, if you have a long commute. Wow. This is happening.

Book launch party next week! Mental Illness Awareness week very soon. Hope to meet you too.

Mental Health Issues: Lessons from the Talk Show Circuit

audiobook in CD format

In six days, Ben Behind His Voices will be officially released (audiobook version, too - preview it here!), although according to Amazon stats there have been healthy advance sales of the hardcover and kindle versions. So it's out there! But, to spread the word, getting the media interested and involved is a huge help - and it's definitely a live-it-learn-it series of experiences for this author.

So far, as far as print, radio and TV go:

a handful of BlogTalkRadio interviews - great hosts, interesting conversations, not sure who listens but I hope there's a reach.  Archives exist.

The Positive Mind on WBAI inNYC with Armand DiMele. Hour-long, insightful interview with genuine back-and-forth conversation. You can hear it on the "Press" page on this site or on Armand's website.

Interview segments on other radio shows such as Kathryn Raaker's Let's Just Talk, airing on several stations. July 9th segment 1, if you're checking the archives. Kathryn was genuinely interested, as she could personally relate from her own family experience. Great prep, great passion for sharing the message.

Boston Globe interview appeared in print last week - done over the phone, all I had to do was talk. Bloggers have also "interviewed" me by asking questions in writing, to which I responded also in writing- essentially writing my own article, I guess, though interesting  answers can only come out of good questions, yes? (links are on Press page too)

This week I drove to Washington DC to appear on "Let's Talk Live", a local ABC-affiliate daytime talk show.  If you check the archives/blog of that show (9/7/11) you'll see our segment did not make that cut. What did? Plastic surgery and the "Blondes vs. Brunettes" female football game (For a good cause, so not frivolous. But still). Hmmm.

Then I went to tape an interview for PBS show To the Contrary. So my six-hour drive was not pointless. My experience there is detailed in my article for HealthyPlace.com. It made me think, that's for sure. They wanted to know if the book brought anything new to the "mental illness issues" table. In my own personal car-talk on the way home, I found the answer. Yes, what we bring to that table is our story. That's what sets us apart. Of course, we tell the story for many reasons - reduce stigma, increase understanding and respect, advocate for earlier detection, better services, more research. Yes. All that. But if the story grabs you, then Ben and our family will live in your heart, where you might become more aware of these things. That's our real "angle": the human face of the "issues."

More media opportunities ahead - but each is its own experience. Yes, lessons abound. And we've just begun!

PBS, ABC, Boston Globe, and the Flu

when mommy's hug could cure

Ben has spent the night - we've all been there - worshiping the porcelain throne.  Either a stomach flu, or spoiled Chinese food (thanks, Hurricane Irene), but who cares why? Poor thing is in pain. No mom wants to see that. Plus, he is whining! Ah, yes, nothing like a 29-year-old whining "Mommy...." - but whenever I'm sick I want to do the same thing, and my mother's been gone since 1994.

There's an additional issue, of course, when your child has schizophrenia. Will he, can his body, keep the meds down? Last night we carefully orchestrated the meds between episodes, and since they are mainly in liquid form we can only hope most of them got into his system somehow. We counted (believe me, we both had one eye on the clock) 55 minutes from ingestion to, um, rejection.

Ben's main concern, despite his pain? "If I throw up, I won't have to go to the hospital, will I?" I thought, at first, that he was over-dramatizing his stomach pain - but then realized he was worried about having to go back to the psychiatric unit for missing one dose of meds. I'm beginning to think this last relapse really affected him - and that maybe - just maybe - he is connecting the stay to his low levels of meds at the time.

I hope so. but - as always - one day at a time. And this morning, thankfully, he is on the mend.  He had to call in sick to work, which he hates, but at least he's staying put on the couch. And his first question this morning, after making sure we called his employer, was: "When should we do meds?"

taping 9/7/11 - watch for airtimes

Meanwhile - The Boston Globe ran a feature on the book recently, and I will travel to Washington DC next week to appear on an ABC-affiliate talk show live at 11 AM, then tape "To the Contrary" for PBS.   First really big-time appearances for the book. What if they ask me what my qualifications are? I wonder that, too, as readers are starting to write to me, asking for advice that I wish I had for them.  All that I know is in the book, and though I wish I could solve others' problems I know I can't. Here's my thought:"

I'm just a Mom who never gave up on her son - but who also learned that, someday, she might have to."

Please visit the new "Press Room" page,  for info and links to more articles and interviews.