What's it Like?: 20 Greatest Memoirs in Mental Illness

Another great resource, especially if you're looking to contribute your experience professionally, and want to get your Masters' Degree online : Masters in Health Care . This latest blog post also lists the 20 Greatest Memoirs in Mental Illness. Whether you have been diagnosed yourself, are providing services professionally, or as a family member (lots of work, no salary!), getting the insiders' view is invaluable.If this were my list, I'd add the following memoirs:Henry's DemonsThe Day the Voices Stopped His Bright LightCrazyBeautiful BoySomeday I hope Ben Behind His Voices will make this list. When it does, I'll know that its message of hope and its dose of reality will have reached more readers - and that the message will spread.  Guess it's a bit much to expect to be on here, since the publication date is still a few months away! Want a peek? Amazon has it for you.

Parenting with Challenges: Sense of Humor Required?

interview, "Family w/ Schizophrenia finds Hope

With the official launch of Ben Behind His Voices less then three months away (OK, by one day, but still...), interest is growing and I've been lucky enough to appear on a few talk show already.  One interview, longer and more serious in nature, is on the HealthyPlace.com website.

A few days prior to this web interview, I appeared on Jaki's Buzz with Wendy McGee, talking about balancing motherhood with a career in broadcasting,acting, and writing.  This is a fun interview with great reaction so far, but one viewer did comment that he thought the subject of  "parenting when schizophrenia hits" was treated too lightly here. 

Seriously? You know, when someone in your family has a mental illness, it does suck the sense of humor right out of you at first. You're too busy reacting, and coping, and trying to fix things. But you know what? After a while, you've got to find yourself again.Sure, you've got to take care of what your loved  one needs, as best you can. But after awhile you realize there's only so much you can do - at least for the time being. And then you've just got to take care of yourself - and, yeah, there's the rest of your family and others in your world who need you to be yourself too.

taping Jaki's Buzz

While Ben was developing his illness, I was a morning radio personality. Make 'em laugh. And you know what? Some mornings - coming in to work fresh from an all-nighter at the hospital Emergency Department admitting Ben for yet another stay - it was no small feat to find the sense of humor I needed to be entertaining on the air. But each and every time I had to do this, it helped me. It helped me to remember that there are parts of life that go on, that are enjoyable, even when heartache lurks around the corner. It reminded me that I was more than just the mother of a son who had just had a psychotic break.

So bring the laughter on.  Believe me, when you need to get serious, you will. You need all sides of you to be the parent, wife, sibling, child, friend or professional you need to be. Take care of yourself too. Sometimes it's all you can do.

Supported Housing: One Giant Leap for Ben

I'd always been under the impression that when Ben was ready to leave his group home, he'd be gradually weaned off the 24-hour staffing to, perhaps, 16 or 12 hours of supervision. But no. Ben's recent accomplishments, notably lasting six whole weeks at his new job, have forced the issue of getting him "graduated" from supervised housing to the next step. Evidently, there is no middle ground in our state. The next step is living alone. Yes, he qualifies for a med nurse to show up twice a day and carry out doctor's orders for supervision of meds.  Yes, there is help "if he needs it" in the office a few blocks away.  But still. While I share and applaud Ben's accomplishments to qualify for this next step, I am also as concerned about this change as I am happy for him.

Tomorrow, he moves. First and last month's rent? He only has part of it.  Most of his benefits were withdrawn almost as soon as he received that first paycheck.  So guess who has to make up the difference? What do people do who don't have parents to help them?

Furniture? He needs a bed, a table and chairs, the basics of life.  So much need, so soon, with nothing in the bank to pay for it now. What if he had no family? What do others do? I think we'll be making daily visits to Goodwill for awhile. Our family has unlimited love to give, but definitely not unlimited funds. Far from it.

Ah, the thrill of the challenge. But finding furniture, and stocking Ben's fridge, will be the easier part. How do I stay away from the fear: What if it's too much for him? What if, after seven careful years of building his life back up, this is too much independence, too soon?

What if Ben crashes? I try not to think this way, but it sneaks into my head when I'm not looking.

After seven years with the safety of all-day staffing, Ben will be on his own in so many ways. He is thrilled beyond belief. I am happy for him.  I am, also, scared. I want to believe that his recent accomplishments - doing so well in part-time college classes, landing and keeping this new job, racking up years now of sobriety - are proof that he is really growing up at last, chipping away at the years he lost when his illness was in the forefront.  I will behave as if I have complete faith in his ability to thrive in this new phase.  And maybe - just maybe - it will all work out wonderfully.

Ben has certainly earned this chance to prove himself. There is little I can do now except be happy for him, support his independence, and - between you and me - keep my eyes wide open for signs of relapse, and my arms and heart wide open to love and congratulate him.

Thoughts?

"Hope, Respect and Dignity" : One CT Doctor Writes about Mental Illness

Bridge House, CT

In a recent article in the Stamford Times, Dr. Michael Basso writes about the need for those non-medical elements in treatment for mental illness. Things like Hope. Respect. Dignity. And, yes, even Humor.

He spoke at a mental health day center, where many in the group were homeless. He found that the above elements created an interactive, respectful, fun session. Here's what he had to say about humor:

"I cracked as many jokes as I could before and during the talk and got the patients engaged in having fun. They were also encouraged to make relevant jokes -- perhaps the most important innovation of all. The laughter put them further at ease and the jokes engaged them in ways that helped return control back to them -- called having an internal locus of control"

Lionel Ketchian, Happiness Club

This reminds me of the Happiness Club, which began in Connecticut but now has spread internationally. Lionel Ketchian, its founder, runs a meeting at Bridge House ("a Clubhouse which is modeled on the Fountain House model of psychiatric rehabilitation. The men and women who attend assist with the running of the program, which helps to restore their sense of purpose, dignity and self worth. Members also work at part time jobs, with staff providing intensive supports") 

Lionel says he always gets much more than he gives.

I've had the privilege of participating in one of the Bridge House Happiness Club meetings. Truly amazing.

Hope. Respect. Dignity. Humor. Yes, please

Glee and the missing mental illness: schizophrenia

Dear Glee writers:  I truly applaud your script this week, where Ms. Pillsbury finally comes to terms with her OCD. Dr. Stephanie Smith blogs beautifully about this here.

I loved the way Glee handled OCD in this episode- the stigma, the symptoms and the road to treatment.  My only bone to pick: the psychiatrist played by Kathleen Quinlan - I'm assuming her vocation, as she was able to prescribe the SSRIs for Emma - spoke beautifully about acceptance in mental illness, mentioning every diagnosis except for schizophrenia.  That, too, deserves an open forum.  Come on, at least give it a mention!

Still, it's a start.  Thanks, Glee. Someday maybe my Ben will may be proudly open about his illness. Maybe. But in the meantime, I'll remain thrilled that he is agreeing to treatment.  So far, so good.

May is Mental  Health Month! Here's a great resource for info at Mental Health America.

Bipolar Disorder on the Cover of People Magazine?

Well, Okay. So it's actually a gorgeous picture of Catherine Zeta-Jones.  Still, it brings one more mental illness into the light, with a matter-of-fact movie star who says it shouldn't be a big deal. I wrote my first-ever letter to the editor after reading this week's issue, which also contained a similar admission from Disney darling Demi Lovato.In case it doesn't make it to print (hey, I tried), this is what I wrote:

Dear Editor,

The best kind of applause to both Catherine Zeta Jones and to Demi Lovato for their courage in refusing to be ashamed about an illness that just happens to affect a body organ known as the brain. As Zeta-Jones so beautifully put it, “There is no need to suffer silently and there is no shame in seeking help.” And Ms. Lovato has, I hope, inspired others of her generation to be open and accepting of their diagnoses and the treatment that helps. As the mother of a wonderful kid who developed schizophrenia in his late teens (a common timetable for those with gradual-onset schizophrenia), I look forward to the day when my son – who, by the way, is in recovery with the help of treatment, patience, and love – and others with schizophrenia can speak as openly about their illness as well. While bipolar disorder is essentially a mood disorder and schizophrenia’s cluster of symptoms is more accurately described as a thought disorder, there are many areas in common. The greatest- and most shameful – of these is the presence of stigma. One day I hope my son – and the many others who have a diagnosed mental illness – will receive the same amount of respect, understanding, acceptance and research dollars as those who have illnesses that affect other organs of the body. Once again: brava, ladies! 

Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)Family-to-Family teacher and trainer for NAMI (National Alliance on Mental Illness)

Schizophrenia and a "Great Personality" - possible? Yes!

This marks one month of employment for my son Ben.  One full month! He loves his job.  He has an answer when people ask him "What do you do?" The increase in his energy and pride is thrilling. Really. Thrilling.

Do I worry, still? Hmmm. Well, let's just say I'm keeping my eyes open for signs of stress. And simultaneously trying to stay grateful in each moment. I don't call Ben to see if he has gotten up in time to go to work - but the thought occurs, several times a day. NAMI has taught me that letting go is part of what parents must do - all parents, actually, but it's a more intense process when you've seen your child led into the mental hospital more than once. Letting go, slowly.  Learning to trust his abilities, slowly.  He has earned it.

Ben said yesterday that his manager told him he was hired because of his "great personality":  friendly, "good with people." Wow. What a long road to this place. I know who my son was before the illness (brilliant, charming, loving, funny); I also know how he was when in crisis (mostly unreachable).  To see Ben's personality re-emerge - tentatively at first but more strongly now - is indescribable.

Schizophrenia and other mental illness symptoms come in two categories: Positive (added to personality) and Negative (taken away from the personality).  The latter is as heartbreaking as the former. Ben's current state of recovery is, I hope, inspiring; still, I know it would change in two days if treatment should stop.  So much more research is needed.So much more. For so many, like Ben, are waiting to come out from behind their voices.

Negative symptoms can be helped by certain medications. They can also sometimes respond to the other vital areas of treatment: community, love, purpose, patience, and the proper balance between challenge and reality. According to schizophrenia.com, a short summary of a list of negative symptoms are:

1. lack of emotion – the inability to enjoy regular activities (visiting with friends, etc.) as much as before

2. Low energy – the person tends to sit around and sleep much more than normal

3. lack of interest in life, low motivation

4. Affective flattening – a blank, blunted facial expression or less lively facial movements, flat voice (lack of normal intonations and variance) or physical movements.

5. Alogia (difficulty or inability to speak)

6. Inappropriate social skills or lack of interest or ability to socialize with other people

7. Inability to make friends or keep friends, or not caring to have friends

8. Social isolation – person spends most of the day alone or only with close family

Catherine Zeta-Jones, Charlie Sheen and kicking the shame out of mental illness

According to CNN, "Catherine Zeta-Jones, has checked herself into a mental health facility.
The actress, who has been by Douglas’ side since he was diagnosed with throat cancer last fall, is seeking treatment for bipolar II disorder, her rep confirms to CNN."

There is an excellent link to an article on bipolar disorder here - and brava for Ms. Zeta-Jones for not only getting help, but for choosing not to keep it a secret.  This takes courage, class - and, I believe, a desire to help others by example.

 As for Charlie Sheen - well, no one can diagnose from afar, but I sure would bet a cup of coffee on the fact that he, too, has bipolar disorder.  Just saying.  And, with acceptance and continued treatment, he could be back on Two and a Half  Men by the fall.  However - the road to acceptance is no short journey. 
Some never make it.  Just read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help, to hear more about why.  He talks about schizophrenia, which is a thought disorder; bipolar is a mood disorder, and that makes for many differences.  With my son Ben's schizophrenia, there is no moment when his eyes shine with his full personality the way they used to before his illness developed; With bipolar disorder, there is often a precarious period during which the highs seemed tempered by the lows. As I sometimes say to the members of a NAMI Family-to-Family class when I teach about the different illnesses, "at least with bipolar you get to be charming part of the time."  It gets a laugh - a painful laugh. But still.  Hence, Charlie Sheen's wonderful timing in comic performances - and his outlandish hubris on his live tour.

However, there are similarities as well in thought vs. mood disorders. Psychosis is psychosis, and it's hard to diagnose a speeding train.

Britney Spears - remember the shaved head? Recall how her father finally took control and became legal co-conservator? See how well she seems to be doing now? That is so wonderful to see; still, in interviews promoting her latest CD, I see no reference to what really seems like a bout with bipolar disorder.  Is it her family's right to keep this all private? Absolutely. But I can't help but imagine how many young people would be helped if Britney were to talk openly about her struggles, and if she was helped by treatment: medication, family involvement, therapy. So many college students suffer from depression and - more importantly - do not seek help because of shame.

Let's get shame in mental illness out of the closet and kick its butt. Being open about treatment is a great step towards that acceptance.  Wishing Catherine Zeta-Jones and her family lots of love, and the same empathy and applause her husband Michael Douglas got when he publicly dealt with cancer.

Spreading Hope: Speaking and Submitting 28UFDXR7Y75H

My potential book publicist just described Ben Behind His Voices, and its message within, as "a beacon of hope" for those who are going through any similar challenge with a disability in a loved one. I hope so. Oh, do I hope so. That is my dream for this memoir, and for this blog: to spread hope, to reduce stigma, to open dialogues, to increase understanding and respect for those with mental illness and for their families.

I've submitted this blog to Technorati so that others can find it. To do that, I must include the code here: 28UFDXR7Y75H.  (It's in the title too - just in case)

Meanwhile, on June 9th, I will be the keynote speaker for Fellowship Place in New Haven, Connecticut.  Fellowship Place is a shining example of how important community is to those in the mental illness recovery process. NAMI reminds us that essentials for recovery include, among other elements:

• a safe and stable environment

• an educated, supportive family

• something to get involved in: work, community, advocacy

• sustaining hope and a vision of what is possible.

My Ben would not be where he is without his community - his job coach, caseworkers, house supervisors, doctors, family a friends. It takes a mental health village.  Kudos to all who serving as a beacon of hope, and to all who are absorbing it all so they too may someday advocate as well.

Fellowship Place Community

NAMI Family-To-Family: Happy 20th Anniversary

My son Ben is two weeks into a job. An actual job, with paychecks and everything. And by “everything”, I mean a reduction in benefits which almost wipes out the money he’s earning…but that’s another story. The main thing is that Ben is earning this money, and that feels completely different to him. The change in his self-esteem is astonishing. He has something to say when people ask him, “So what do you do?”

As the publication date of Ben Behind His Voices approaches,  I find myself thrilled that its launch will coincide with the 20^th Anniversary of NAMI’s Family-to-Family Program, because that is the course that saved my family by teaching me what I needed to know to cope with my son’s mental illness. NAMI helped me, and then I had the tools and the support to help my family – including, eventually, my son.

In January of 2002, I walked into my first F2F meeting – and I walked out completely changed. Although NAMI support groups had thrown me my first lifeline out of the hellish confusion of my son’s symptoms, I needed more. F2F was different from the support meetings in that it was a structured, once-a-week, course that was more educational in nature. In twelve weeks, I could learn about mental illness and its effect on the entire family, including the person who suffered from the illness.  This was taught by other family members who were trained by NAMI to implement the course. And – it was free.  All that was required was the commitment to attend all twelve classes, one evening a week, for 2 ½ hours each class.

What did I get?

Clarity.

Clarity can bring many other things along with it: Understanding. Mourning. Hope. Anger. Grief. Bonding.

This, I think, was a clearing of my future path to acceptance and action.  It was a start, and a glimpse.  Without this knowledge, I might very well still be fumbling blindfolded through the woods. Sometimes I still am – but since F2F, I always have an idea how to find the path once again.

The brilliant curriculum of F2F was designed by Joyce Burland, Ph.D a clinical psychologist whose experiences of coping with schizophrenia in her own family over two generations have deeply influenced her understanding of family trauma in mental illness.
This was a program written by someone who had been there, who had stumbled through her own journey as the mother of someone with a mental illness. Dr. Burland’s idea to educate the families in similar situations had initially been met with disbelief. Countless professionals said: “What do families need all that information for?” But she knew better, and persevered.  And now, the program has grown and keeps growing. 
Without revealing too much about the materials, which really must be experienced in the group setting that helps make it so affecting and valuable, I will tell you that there were many flashes of insight and realization that began to reshape my perspective. This process was not always easy.  In fact, it was never easy.  Most of that clarity came at a cost. Understanding teamed up with guilt.  Information came along with fear.  Changing my vision of the future brought anger and grief.
A lot of it was hard – very hard. But at least it was real. And I discovered that I was not the only one dealing with these issues, having these feelings.

Family-to-Family’s greatest gift was this: I stopped hating my son.  I learned new ways to cope, new ways to communicate with Ben. The course took us from painful realization to empathy for our relative’s experience and the hope that our families could someday absorb these new truths and progress to acceptance and advocacy.  But the only way to the final stages of emotional response was through the pain.  No shortcuts to the stage of acceptance.

There was so much I had learned. And still so much I didn’t know.

But now, armed with all this new and overwhelming information, I felt I could at least talk to the professionals on a respectable level. It empowered me. The class members  empowered each other.

In the past, I had been trying not to react.  Now, at least, I had some tools as to how to react, and some empathy for what life might be like for Ben.

I was going to need it all.  Many crises lay ahead in the next few years. Without NAMI, I don’t know how we would have survived it. Even with NAMI, I don’t know how we did it.

Happy birthday, Family-to-Family.

Mental Illness and Work: Capability, Dignity, Small Steps

Three hundred people showed up to a job fair this month for seasonal work at a local tourist attraction. Twenty people were hired, and one of them is my son Ben.  Why is this such a big deal? Because Ben hasn't been hired for a job in over eight years, since before his first hospitalization for schizophrenia. I am so overwhelmed with surprise and pride at this news that I realize I hadn't even dared to dream that this could happen yet for Ben.  In recent years, he'd begun to succeed in college part-time (the fact that he is starting to know what he can realistically handle is a huge step in itself.)

So much of Ben's growth in recovery has happened in these small steps that this huge leap into the work world scares me a little - yet I know (and keep reminding myself) that this is Ben's journey.  My questions - will this be too much stress for him? will he be able to wake himself up every morning when he has to get to work by 8:30? will his schoolwork suffer? - are ones I must keep to myself, and trust my son and his team of caseworkers to handle the answers without me.

But - over-riding all this is the wonderful pride I see in my son's eyes.  The value of having an actual job, of feeling useful, of being wanted for what you can offer: yes, indeed, priceless.  Ben, who while in the throes of the onset of his symptoms wrote that work was a "government plot designed to enslave us," has now changed his mind.  This week he wrote this:

If I were to give one piece of advice to the reader of this 'message', I would say that in order to get to where you want to be in life, what you have to do is walk the path.  Now, I understand that this probably sounds easier said than done, and - I won’t lie- it is. I now have goals for my life, and I must be willing to actually perform the steps that the goals require. One way to make this easier is to learn from one’s past, and embrace the lessons which will make walking the path easier. - Ben, 2011

A huge question, though, is one that no one on his team seems to be able to answer correctly - what, exactly, will be the effect of this minimum-wage job on Ben's benefits?His job coach says he is an "employment specialist", not a "benefits specialist," so he doesn't know. Ben's group home staff members ask his agency caseworkers, who ask their supervisors.  Wrong answers abound.Finally, I find some answers. Tips to help you, if you are in similar circumstances:

• There is a "benefits specialist" somewhere in the system.  Hunt and find.

• Social Security has a "Ticket to Work" program designed to help those receiving disability benefits as they take steps to self-sufficiency. Go to www.socialsecurity.gov/work for details

• There are different rules for SSDI, SSI, and any additional benefits you might get on a state level.

Ben is walking his path. Today. And someone has finally noticed - enough to hire him. I, as always, have my fingers crossed and my gratitude high. Having a job to go to is so the most amazing boost for Ben's dignity. Is it that way for you, or your relative with mental illness?

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness by Linda  Appleman Shapiro

My rating: 4 of 5 stars

Linda Appleman Shapiro writes honestly and beautifully about her experience as the daughter of a mother with mental illness, coping with  the confusion of the mood swings, her struggle to understand, and the stress and shame of keeping it all a secret. We meet her family members - Linda, her mother and father, and her brother - and soon the dynamic in her Brooklyn home becomes clear - as does the love that prevails.

In addition, we get a nostalgic peek at life in Brighton Beach, Brooklyn, back in the 40's and 50's, when "hanging out at the beach" was a huge part of a young teenager's life. Shapiro has the hindsight, now, of a trained and experienced psychotherapist.  This, combined with her clearly-depicted childhood memories of life in those "Four Rooms" makes for an engaging, enlightening and ultimately therapeutic read.

View all my reviews

His Bright Light: review of Danielle Steel's book

His Bright Light: The Story of Nick Traina by Danielle Steel

My rating: 4 of 5 stars

This is my favorite Danielle Steel book. Yes, it is partly because I share her experience of parenting a child with mental illness (though Nick had childhood-onset bipolar disorder and my Ben has schizophrenia which began to appear gradually in his mid-teens) - but, this common thread aside, I couldn't help but applaud Steel's candor and courage in sharing her experiences with the world.

Her Nick is vibrant, charming, brilliant - and troubled. Steel struggles to understand, especially in the light of all the "experts" who tell her that the illness she suspects simply doesn't exist.This memoir not only lets us into the family experience, it also shines a spotlight on the mental health system, with the flaws and limitations of too little research and too much closed-mindedness.

And, oh boy, are there flaws. From laws that forbid the family to "force" medication on someone who is so clearly helped by it to psychiatrists who are all too quick to "blame the mother", these "flaws" quickly close door after door.

Kudos to Steel for telling her story. There is no fairy-tale ending here. Perhaps that's why she writes so many such endings in her novels.

Mom-to-Mom, and I thank Steel for this book. And my heart goes out to all in her family.

View all my reviews

Henry's Demons, review

Henry's Demons: Living with Schizophrenia, A Father and Son's Story by Patrick Cockburn

My rating: 4 of 5 stars

Henry's Demons is an insightful look into both the family experience when schizophrenia strikes a loved one, and into the U.K. System of care.  As a parent in the United states, I couldn't help but compare Henry's experience (e.g. months at a time in the hospital) to my son Ben's story here in the United States, where it seems that every day the hospital must justify the stay to the insurance companies.  I must admit, I was a bit jealous at first; yet, I don't see that Henry benefited much from his extended stays, so maybe not. Hmmm.

Cockburn writes movingly and intelligently about his father's-eye view of Henry's illness and the actions it triggers; as a journalist, though, he focuses on many of the issues and facts more than his emotions about Henry's illness.  Through Henry's chapters - a unique feature of this book - we get a view of what incidents were like from the point of view of someone who is suffering from schizophrenia, and actually hearing the "voices" that encourage him.

We don't get to know Henry much before his illness, though there are glimpses.

Henry spends a lot of time hospitalized; he also spends a great deal of time escaping. How is this so easy to accomplish? Yet, I have no doubt that every word is true.

This is a great addition to anyone's understanding of the family experience when mental illness strikes. Indeed, it can happen in any family.

View all my reviews

Ticket to Work: The Road to Self-Sufficiency, fingers crossed.

Ben has a chance at a job. A real job. Minimum wage, yes, but for him to make it to a second interview, and then to a possible job offer for the summer...well, the tears I feel remind me that I hadn't really even dared to dream this for him.  Ben hasn't had a job in eight years, since he was twenty years old.

He is so excited - it's the validation, the possibility he may be able to earn money, be useful, have something to say about his life other than "I live with roommates and do volunteer work" and - lately - "I go to school part-time", a miracle in itself .  He is also facing, suddenly, questions like:

• What will come up in a background check? Will the employer know about my hospitalizations and diagnosis?
• Will I lose my SSDI? SSI? State help? Medicare? Medicaid?
• What is a "Ticket to Work", and do I have one?
• Will I lose respect and the chance at this job if I reveal my diagnosis?

Practically, I was able to find answers by calling Ticket to Work, and by visiting the Social Security Work Website
The emotional questions are the ones that are more difficult to face
- but Ben is asking those questions, and setting his limits as to how much he wants to, or has to, reveal.  His dignity is so at stake; still, I'm amazed and proud at what he's doing: calling his job coach himself, contacting other so-called "experts", formulating exact answers to the questions that may come up.  He has more than risen to this occasion.  Again, the happy tears.

And the fears, which I am trying to ignore.

Will this be too much for Ben? Will he be able to get to work at 8:30 AM each day? Will the no-smoking rule cause problems for him, even though he says it is not an issue?  Will the stress cause a relapse? Shouldn't he take a lesser, part-time position?

But these are Ben's decisions, not mine,  All I can do is help with the research and share the information with him and his providers. Then let go. And have faith: faith that he can handle 32 hours of work each week, and still keep up with 6 college credits. And not break under the stress.

Nothing would make me - and Ben - happier.

Author Reflections: "Ben Behind His Voices" launch date set

It's real! The official publication date for Ben Behind His Voices is September 16, 2011.  When you search on Amazon or Barnes & Noble, there is a listing.  As a first-time author, I have to admit that this is even more exciting than my first kiss. Yep. At least I think so - the first kiss was so unexpected (another story for another time), while this listing is the culmination of  years of writing, rewriting, query letters, bouncing back, trying again, and finding and reconfirming my own faith in the book's value to others.

Yet this is nothing - nothing - compared to the challenges Ben himself has faced in the same period of time.
In a way, the timing of Ben's publication couldn't be better, for when I first sat down to write our story Ben was just a few months into recovery.  Now, he has logged over five years (knock wood) hospital-free, and we've been able to see how recovery can progress when psychosis is avoided for longer periods of time.  So, because of this long journey to publication, I hope that our memoir will offer even more information and hope to its readers, as I've updated Ben's progress frequently as the drafts piled up.

Here is the description from the listing (image and "search inside" features will come later, but you can pre-order) - it contains my hopes for the book's effect: to increase understanding and respect for those with mental illness, and for their families; and thereby reduce stigma.

"Ben Behind His Voices is the gripping story of one family's challenging experience when their firstborn is gradually struck down by schizophrenia - and how they learned to love and support him throughout his eventual steps to recovery. This page-turning narrative will inspire and educate any family going through hard times with the mental illness of a loved one. It also provides valuable insight for others who want to understand how families are affected when mental illness strikes."

For any families in the same boat: there are guidelines of info and resources at the end of most chapters. I hope you will fall in love with my son Ben before you get to the part where his illness takes hold. He is there, behind his voices, all throughout the book - and he still is. As is your loved one. Hard to see sometimes, I know. but love helps. So much.

Marijuana and Schizophrenia: another view

The latest fad in schizophrenia theory: marijuana caused it. Yet another finger to point, to create the illusion that it is somehow the "fault" of the person who has the illness. Here's an intersting article that tells another side of the story: Marijuana and Schizophrenia: Cause or Therapy?

De. Phil Leveque begins with these words: "This story is engendered by an article in TIME Magazine Feb. 21, 2011 entitled Pot and Schizophrenia: A Dangerous Mix. To put it mildly, TIME is full of crap and so are the authors of the medical article from the University of New South Wales in Australia. It states they reviewed 83 studies and found that POT smokers who developed psychotic disorders did so 2.7 years before non-smokers. The medical article is very suspect and I will try to explain why."

I wrote to Dr.Leveque:
"Thank you! Finally, another view to the newly-popular 'marijuana causes schizophrenia' theory. As the mother of a son with schizophrenia, educator with NAMI, and the author of a memoir that we hope will spread understanding and hope re mental illness, I applaud you for your article in the Salem-News.

It has been my understanding that my son began to smoke pot as a reaction to his illness, not the other way around. Schizophrenia is nobody’s fault. Many who don’t know better will grab at any explanation so that they feel we have some control over who “gets it” and who is spared. The only thing I know for sure is that early detection and treatment can help avoid psychosis, and therefore provide a better prognosis for recovery. But my son did not 'cause' his own illness, through marijuana use or anything else. Thank you for refuting the Australia study.

If you need any comments from a Mom/author who has been through it – and whose son is currently living a full (and clean/sober) life, despite his illness, please feel free to contact me.

Thanks again,
Randye

Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)

Can Schizophrenia be Prevented?

If you want the facts and latest news about schizophrenia and the people affected by it (those who have been diagnosed and the people who love them), I highly recommend two amazing websites: http://www.nami.org/, and www.schizophrenia.com.

NAMI has taught me that there are nine stages of emotional response for the families of those with mental illness. Whether you are in an earlier stage like crisis/chaos, a middle stage such as anger/grief or a later stage such as understanding, information will - immediately or eventually - help to empower you.

Click on the address or title for the links to each website - NAMI's home page, and a new article found on schizophrenia.com about prevention of schizophrenia.

Preventing Schizophrenia
One of the messages in my book Ben Behind His Voices:One Family’s Journey from the Chaos of Schizophrenia to Hope is that early detection is vital. Articles like this help us know what to look for, much as we may not want to see it at the time. Much research suggests that prevention of psychotic breaks can avoid the destruction of brain matter. I encourage you to learn all you can

Legislative Social: Where were the lawmakers?

Here in Connecticut, it's fix-the-state-budget time, and our local NAMI affiliate arranged an event last night that was powerful, organized, and well-attended - except for the state legislators who'd promised to appear. The speakers were inspiring; they had progressed from homeless to productive, from hospital patient to independent citizen, from dropout to Masters Candidate -all with the help of (a)integrated treatment and (b) community. If services are cut for these speakers, they will lose all they have gained. I wish Ben had been there with me to hear their stories; I hope that, someday, he might be willing to share his.

If services are cut, the true cost will be great.
How much more will it cost the state in the future - and, more importantly, how much will be lost in the lives of these speakers and others like them - if we take away the support that helps them now? Without access to a supportive community and proper treatment - including essential medication - my son, all those inspirational speakers and countless other citizens like them, are likely to wind up in hospitals, homeless shelters, the streets, or in jail. That would, indeed, be pound-foolish - and devastating to the lives of courageous individuals who have already accomplished so much.

Where were our state reps? How can they hear the message? It falls to us to speak up for ourselves, for our loved ones. But no one can tell the story the way it was told last night. And too many were absent. Kudos to the 2 state reps who did find the time. Thank you.

Another family's schizophrenia story

Before we found our publisher for Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope, my agent and I received several quite lovely rejection letters, stating how much they were moved by the story and by the writing - but that they feared it "just wouldn't sell" because of the subject matter.

Now, coming out very soon, another family's story, called Henry's Demons. This is by Patrick Cockburn, his wife, and his son - a UK family, each telling their part of the experience.
Reviewed by the NYTimes, moving up high on Amazon. I've just ordered it, and hope to connect with the family someday. Yes, this subject does sell - and it needs to be heard.

Is this "competition" for my book? No! It is a partnership. The more families that come forward to tell their story, the more we can all work together to increase understanding, reduce stigma, and increase respect. Bravo!