More than just Meds: Recovery Reminders

It can be so easy to get used to success, then to keep wishing for that higher bar.  I've read that it's a human to forget extreme physical pain - otherwise why choose another bout with labor and childbirth? - but what about the emotional pain attached to crisis periods in mental illness?

All it takes is one gentle reminder and the feeling of stress comes running back in.

We've had, now, almost five months of stability with Ben, ever since the family stepped in to "help" his official care team.  He is blossoming once again after a painful summer reminder that without the right medical treatment as the cornerstone of recovery, the house built upon that foundation can crumble like a house of cards.

Watch for Effects of Change

These days, it's almost easy to forget that Ben has schizophrenia. He just went to his first-ever employee Holiday party, which means he is valuable enough to his company to have lasted this long, even into the off-season. His job has provided so much for him: purpose, community, focus, and a paycheck.  He has something to talk about when someone asks, "so, what do you do?" He loves his job and feels like a person again.

His two college courses, too, have been a source of purpose, structure, and pride. What I wouldn't have given, over a decade ago as his illness was developing, to have heard this from one of his teachers:

"Ben, you did your work with dedication and care for details, you contributed to the class with intelligent questions, comments, and a great sense of humor... You are an A+ student, and your final grade for this class is a well deserved A. It was a true pleasure having you on my class. I hope I'll have the fortune of having students like yourself in my classes in the future."

Wow - yes, I am serious. Those are the comments from one of his professors!

That almost makes us forget that, five months ago, Ben was wandering the halls of a psych unit, talking to the voices he never admits to hearing. The sudden lack of treatment services he had experienced during the summer of 2011 had led to a lapse in his intake of his crucial meds, which in turn led to a refusal to return to taking them at all.

We almost, I must remember, lost him again. But thankfully he returned to what his psychiatrist says is  his "former baseline."  How? Meds in place, the other pieces of recovery could be rebuilt:

Purpose, Structure, and Community(family, friends, co-workers, etc.)

Love helps too. But it didn't seem to stick so well while Ben was in crisis.  Now, Ben is healing - and I see signs of emotional growth I have not seen in years. He cares about school. He is thrilled that, at last, he can afford to buy presents for the family with his own money.

Still,  recovery (or stabilization, maybe a more accurate term) can be fragile. There is so much more to it than the medication cornerstone. This week, Ben seems just a little bit "off" at times.  Is it the meds? Always the first thing we wonder. But I suspect his subtle agitation and occasional lack of focus right now is due more to the thing that affects us all, some more strongly than others:

Change.

In the past few weeks, Ben's school semester has ended, his work hours shifted (holiday closings), and he has been experiencing the excitement of giving/getting holiday gifts. Even as a little boy, Ben was always a little "off" as holidays and birthdays approached. Like many of us, the anticipation and uncertainty was almost overwhelming, disrupting the predictability of life. That's one reason we like this time of year, and also a reason many have an opposite reaction as extreme as depression.

It's good to remember that schizophrenia recovery is not just about meds. Ben was anxious around the holidays as a child, so why should his basic nature change now?  It isn't always about the meds - it can be about life. Purpose, structure, community: these things help shape us all.

So we will keep our eyes open, naturally. But also our minds. When life settles into routine again, I think Ben will too.  That has been his pattern since way before his illness entered our lives.

Happy holidays to all!

Diagnosis, Schizophrenia: What Came Next?

Interview on Conn Jackson' show, Get Connected-- he on windy Manhattan (California) Beach, me in a nice warm studio in Manhattan (Big Apple). He asked some great questions, and allowed me to highlight the importance of therapeutic alliance, NAMI, early detection, reduction of stigma, support and education for families, and the importance of love and hope.

Thanks, Conn! Here's what he had to say about the interview on YouTube:

"Watch as Randye Kaye, author, tells us about her son's struggle with schizophrenia and how she helped him though it. Why is Randye's secret advice? Watch and find out!"

Open Hearts and Mental Illness: View from both sides

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

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?

Defying Mental Illness: a pre-review

So much to be grateful for this Thanksgiving - especially considering how else things might have turned out without knowing some steps to take when Ben had a relapse this summer. Something I've felt before as well as now: We might have lost him.

For over 20 years, we have spent the holiday at my younger brother's house, around the same table with his wife, sons, and others. Ghosts of Thanksgivings past: Ben absent, when he was wandering homeless out West. Ben not there, because he was in the hospital. Ben there physically, but so involved with his inner world that he might as well have been absent.

This year, though, was wonderful. After a very tough summer, Ben has returned home once again in more ways than one. Part of this year's success is due to a very understanding employer who can see past his illness to the value he has underneath. And for that, how can I - and Ben -not be grateful? We are.  The change in Ben, beyond the effects of his medical treatment, has been enormous because of the dignity that comes when you are employed, useful and appreciated.  This is true, I think, for us all.

Meanwhile, I am reading an early copy of a book called Defying Mental Illness: Finding Recovery with Community Resources and Family Supports. So far, I love this book. The authors, Paul Komarek and Andrea Schroer,  say this in their introduction:

The authors know many people who have made it through the struggle with mental illness, andmany family members and professionals who have supported people with difficult conditions.They have come to terms with mental illness, faced every kind of disorder, and dealt with everykind of treatment. They have rebuilt lives, repaired family relationships and achieved meaningfulsuccess.You can accomplish this too.

I'm already hooked! Will keep you posted. Ben, Ali and I tell our story in Ben Behind His Voices.  My first reaction is that we all need a book like this one, too. These authors, I suspect, will provide some concrete information in this book that is "a book that is not too technical, and suitable for communityoutreach work."  Welcome!

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!

Crisis Intervention Team Training Makes a Huge Difference

Officer Newkirchen, Deputy Chief Lyddy, Captain Smith

Early this month I attended the annual speaker meeting of NAMI Fairfield, a very strong affiliate in Connecticut.  Our guests? Members of the local police force, one of its eight officers trained so far (as of the end of this month) for the CIT (Crisis Intervention Team).

Here a few things I learned:

1. All Police Academy graduates have had some training in Crisis Intervention. The CIT-trained officers, however, are have advanced knowledge and skills. Kind of like getting the heart specialist instead of the general practice doctor.

2. Police Officers really do care, and want to prevent crime rather than have to make arrests after the fact.

3. Police force hires only about 1% of those who apply. Wow.

4. Those with mental/emotional needs 7 times more likely to encounter law enforcement

5. CIT Actions now include follow-up with the families after an incident to gather key info and make sure they know about resources. Many are unaware of support groups and other places for info/help.

6. Families can pre-register information for the CAD (Computer Aided Database) in case of future incidents.

7. "No one likes to make arrests."

8. CIT Training helps us all. And these officers deserve our thanks. I know, personally, that without the empathy and understanding police officers showed when Ben was confused and symptomatic, his current life might be very different. Officers in the know took him to the hospital, took the time to call me for information, and handled Ben with respect and care. Thank you.

9. Any dollars spent on CIT Training saves lots of taxpayer dollars later. Untreated mental illness has a much higher cost, financially and emotionally, than treated mental illness. Ask my son, who is earning a salary instead of costing the state money for a long-term stay in a nursing home. Prevention works, and saves lives.

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

Practical Advice: Treatment Advocacy Center

This post is for you if you need some clear, practical advice on how to be prepared for a mental illness emergency. The possibility always lurks in the corner, while we try to keep on eye on gratitude for the good days.  The Treatment Advocacy Center has an excellent page on this topic, with step-by-step instructions for keeping the monsters at bay by knowing we are ready for them.

I will send you there through this blog post by their Communications Director, Doris Fuller, who says:

We who love someone with a severe mental illness probably all have our own personal coping mechanisms for getting through the worry and fear and frustration of living with the impact of treatable but chronic brain disease. The demons retreat, but they never retire. For me, being ready for them is the first defense.

I suggest you read her short, poignant-yet-realistic post first, but if you're impatient here's the link to the Be Prepared for an Emergency page.

Like all preparation, this takes time - but will save you a lot more in the future. Trust me.

Thanks, by the way, to all of you who wrote to express concern about Ben and his "adventure" in a questionable neighborhood. Like Doris in the above blog post, I had my eye out for a stress-triggered return of symptoms, but luckily his reactions to the stress all seem quite conventional. The only "demons" were the ones I could see as well: fear of returning to that neighborhood, reminding us to set our home alarm and change the locks, some reluctance to be alone. I would feel the same way.

Risk: The Price of Independence?

Ben has been spending a lot of time with us lately; in fact, this is the closest we've had to daily contact since he lived with us prior to his first hospitalizations in 2003.  It's different now; he has grown.  Eight years in a group home have taught him independence, respect and self-esteem that he'd have never gotten under our roof, safe within our wings and safety nets.

But there is a limit.

Since his episode this summer (right after the too-swift move to unsupported housing), we have had to step in and help guide Ben back to the self-sufficiency he'd earned before. Now, though, I don't trust the services he is receiving - and, I think, he doesn't like living alone as much as everyone said he would.  So, much more often than before, he spends the night with his family.  We drive him to school, to work, to meetings - feels like high school years all over again, pre-drivers' license.  It's fine for now, because it's what Ben needs. But we encourage as much independence as we can, to boost him back up to the mental illness version of young adulthood.

Two nights a week, therefore, he stays at his apartment after school and then takes the bus to the "anonymous" meeting he has attended for six years. Last week, to our horror, this solo journey into a questionable area of town resulted in near-disaster. Ben was mugged. His cash, his beloved backpack (containing precious cargo: textbooks, school papers, handheld video games, poetry, the ipod he had saved for for over a year), his keys - all stolen. Psychically, it could have been so much worse - he was thrown to the ground and threatened with what they said was a knife , but he got away with a wrenched shoulder, a red mark on his neck, and some scrapes. Whew. But now he is, understandably, skittish. He won't go into that neighborhood again, and he is easily spooked now. Anyone would react that way - but with mental illness complications there is addition worry: will the stress trigger symptoms? will he backtrack in his progress? will pain relievers interfere with his meds?

We count ourselves lucky, of course. He is alive, and somehow we will replace the physical things he has lost. He reacted very sanely to the threats - "take anything you want, just don't hurt me." Thank God. But he feels violated, spooked, and afraid in ways of the independence he has worked so hard to regain.

One day at a time. I think we'll drive him to meetings in safer places for awhile. I'd rather he be safe than independent right now. And the delicate balance continues.

Mental Health Awareness: Don't Let it Stop

As "Mental Health/Mental Illness Awareness Week" draws to a close, I open with the hope that awareness will continue. It must. We have come so far, but there is a long way to go.

With luck, Ben Behind His Voices will do its part to help spread that awareness. Last week I did a "radio interview blitz" - 20 interviews in a row! - and a frequent question was about why I wrote the book.

I'm going to let Amy Barry, award-winning columnist for "Parent's Eye View" in Connecticut, answer that question in this excerpt from her recent article, Book Dispels Myths of Mental Illness (click on the title to read full article). Thanks to Amy for asking the right questions, and framing them so beautifully with her own words.

More than a decade ago Congress declared the first week of October Mental Awareness Week to draw attention to the efforts of the National Alliance on Mental Illness (NAMI), an education and advocacy group that aims to "change hearts, minds, and attitudes" about mental illness on a grassroots, community level.
Sadly, we still have a long way to go in accurately diagnosing, treating, creating empathy for, and reducing fear of those who suffer with mental illnesses, despite the fact that illnesses such as schizophrenia are estimated to strike one in 100 people worldwide.
The recently published "Ben Behind His Voices: One Family's Journey From the Chaos of Schizophrenia to Hope" by Randye Kaye is an intimate, honest, heart-wrenching story of a mother and the son she adores slipping away into the throes of mental illness. (The name Ben is fictitious to protect her son's privacy).

She says her background as an actress and performer makes her a storyteller and helped her write this book."

It gave me the capacity to step outside the story and tell it," she says. "I think we learn best through stories. You can make the point and teach the facts, but if you don't illustrate it with stories from your life and experience, people can't connect to it."
Kaye's hope is for the story to be gripping and for people to care about "the characters" and also get helpful factual information, which is included as chapter guideposts.
She says she didn't write the book for herself - she had already spent a lot of time processing the grief of having a child with a mental illness."

The fantasy that nothing can happen to your kid gets shattered - and it's a really tough piece of glass to shatter," she says. "I wrote the book for parents so they wouldn't feel alone, and I wrote it for providers (therapists, school psychiatrists, social workers), so when they meet them - which is usually at the end of their rope - not to judge them, and to allow the families as much as possible to be part of the recovery. I also wrote it for my son - to increase understanding and reduce stigma for those with mental illness. Until we understand it, we have no idea how much courage it takes (someone like Ben) to get up and have a day."

Parenting, Illness, and...Guilt?

Amanda Fellows, a fellow voice talent and radio host for Business Women Connect, interviewed me today for her show on Blog Talk Radio.  We had a luxurious half hour for the interview, rare in commercial radio. Of course, it went by in a flash.

Amanda Fellows

Amanda asked two questions I hadn't heard yet in this round of interviews for Ben Behind His Voices. One was about the process of narrating my own words in the audiobook, published by Spoken Word Inc. (since we are both voice talents, that question wasn't too surprising). The second was about two of the book's chapters, and my feelings as a parent when I had to let go of Ben and allow him "freedoms" that terrified me: once when he wandered homeless in Idaho, a few years later when I had to declare him homeless in order to get him into the system of state care that would eventually help him recover without my constant watch.

Amanda asked, "How did you deal with the guilt?"

My answer had to do with recognizing the difference between productive "appropriate" guilt (e.g. forgetting your kid's birthday and making sure you never do it again) and unproductive "inappropriate" guilt (e.g. I feel bad that I had to ground you, and you missed a party).

Mental Illness certainly raises these stakes - raises them high - but still guilt can be a waste of energy, and can hold back progress that is painful but ultimately necessary. You gotta do what you gotta do.

You can hear the interview here:

Listen to internet radio with Business Women Connect on Blog Talk Radio

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.

Sharing the Message: Interviews, Reactions, Reviews

I had the pleasure of being interviewed on WBAI  in New York by Armand DiMele, for his popular broadcast "The Positive Mind" .  The show aired on August 23, 2011, but you can listen to the archived show here:

If you'd like to read more about Ben Behind His Voices, I've had the pleasure of being interviewed by several writers recently. Here are a few links:

Review and Interview

Oakland County Moms Interview,

Schizophrenia - Parenting Mental Disorder

Touching lives, opening eyes...hopes for the book

About four weeks until the actual book release, and yet the most amazing gifts have been coming my way in the form of e-mails, on-line reviews, and blog comments from those who have already read it, via pre-order.  These reactions warm my heart, and bring tears to my eyes - because they resonate so much with the reasons I felt the story had to be told.

Meanwhile, my Ben has actually asked to hear a bit from the book. First time ever. I think he is starting to accept that it can be of help to others. The road to this acceptance is his journey to take, at his speed. Locally, some people have slipped on occasion and called him "Ben" - which is not his real name - and he laughed about it. Whew. Trying to honor his privacy, and also keep the door open. He did give me permission to write this memoir, as long as it was clearly from my perspective (which it is) - but I'm still releived to see that he still seems supportive of it, even now that it is real: a book you can hold in your hands.

Among the comments:

"It truly is extraordinary. Your writing style is fresh, captivating and riveting. Your vulnerability is inspiring and wonderfully raw. As someone who has been immersed professionally and personally in the world of mental illness, thank you."

"I find your book a miracle of persistence, strength and love. It is a great book, in particular, I think, to give a view of what parents go through."

"I just finished reading this book for a review.... I just wanted to say that I am both incredibly overwhelmed and in awe of your strength and your family's. I fell in love with Ben through the story; felt the sorrow, the fear, the pain, the anger... I am so blessedly thankful I get to have a chance to share this story with all of our readers."

" I couldn't put your book down because I could relate to your stories and all the stages of acceptance that you went through and are continuing to go through."

Thanks to all for taking the time to write, and comment.

Another theme is developing as well, as I read your comments -- many who have been educated in the fields of psychology are telling me that it has really opened their eyes to early symptoms of mental illness - and that (shock, to me!) there was no requirement to study these signs as part of their curriculim.  I have been told by fellow author Susan Inman (After Her Brain Broke) that this is often true in Canada -but I always assumed that here in the U.S. our providers were adequately educated about mental illness. 

If you are a therapist, school psychologist, social worker, etc - were you taught about these illnesses?  Were you educated as to early symptoms to faciliate early detection, and to help families participate in treatment? 

If you are a teacher, professor or college administrator, are courses in the major mental illnesses part of the curriculum in these fields? Why or why not? 

Just asking.