New Home for Ben Behind His Voices

News! This is the former site of the blog for "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope" Please go to its new address, http://benbehindhisvoices.com/blog, where you can follow, subscribe, and see reviews, news and events! Hope to see you there!

Library of Clean Reads: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope by Randye Kaye

Library of Clean Reads: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope by Randye Kaye

Ben Behind His Voices, blog: New Address reminder!

Hi my dear followers -
 Just reminding you that my most recent posts can be found at the new site for this blog, Ben Behind His Voices blog. I hope you will follow there for updates, excerpts, news, and to join the conversation about issues and emotions when mental illness strikes the family.

Happy to tell you that Ben Behind His Voices is receiving some great advance reviews! You can preorder, and also peek inside, on Amazon here: Ben Behind His Voices on Amazon

There is also a facebook page and group (all "likes" most welcome!)- and the book's website. So once again thanks for following here and I hope you will continue to follow, read, share, and tell your friends.

Thanks you - see you at the new address!

Ben Behind His Voices Blog: New Address to Continue the Conversation

Thanks so much for following and commenting on this blog, whether you've been here from the start or have just discovered it.  Early this month (June 2011) the site content was moved to a new URL, easier to find as part of the new website for Ben Behind His Voices.

http://www.benbehindhisvoices.com/blog

 My publisher suggested this would be an easier address for people to find the blog, and the book info, when they search.  I'll keep this site active for a few more weeks, and then will remove the content as it has been republished at the new address.

 Please check this new site for the latest posts, and I hope you'll subscribe/follow there to stay in touch - and, as always, spread the word to anyone who might want to be part of this growing community.  Thanks so much!
And, of course, I continue to blog about the issues that affect families dealing with mental illness at healthyplace.com, a terrific resource for many topics in physucal and mental health.  I invite you to check out their site for blogs, info, interviews and other content. HealthyPlace.com.  My blog there is called "Mental Illness in the Family"

Schizophrenia and Family: Walking the Tightrope of Recovery

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

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


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

Eighth Annual Doctor Albert J. Solnit Memorial Lecture

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

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

Fellowship Place to host our 8th Annual Dr. Albert J. Solnit Memorial Lecture: a discussion with  Author Randye Kaye, Thursday June 9, 2011 at 7:00pm, at the Whitney Humanities Center Auditorium of Yale University, 53 Wall Street, New Haven.  
Join us for a conversation with Randye Kaye, based on her book "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope", to be published by Rowman and Littlefield in September 2011.  Kaye will share with the audience her experiences with her son who suffers from schizophrenia, how mental Illness affects the whole family and how they helped guide him on his recovery journey as he went from 7 hospitalizations to now 4 semesters on the Deans List at his school.

Independent Living and Mental Illness: How Much, How Soon?

When a hug could fix everything...

I've spent a good part of this afternoon yelling at the people who are supposed to be supporting my son as he completes his first two weeks in "supported independent living." This was determined to be the next logical step after doing so well in his group home - that's what they told me, anyway.

Yeah. sure. Where is the support? In these two weeks, he has become isolated when not at work, has clearly (to us) somehow cheecked his meds twice, and has "forgotten" to show up for morning meds once.  He also missed an appointment with his caseworker. This, too, he "forgot"  - and they caseworker let it slide. After the initial move-in rush, Ben has not finished unpacking. I'll bet there are roaches crawling over unwashed dishes in his sink.  I hope not, but let's just say I have concerns.

Why? Well, it could be the stress of too much change too soon. After seven years in Harrison House - where he had 24/7 staffing, 7 housemates, required chores and meetings, and someone to be accountable to - Ben now is expected to live alone, and "take responsibility."  Except for showing up twice a day to take meds, he is left to his own schedule, his own decisions, his own life. Ben has lost his community, his sense of purpose, his structure and his parental figures.  All without gradual steps. It's like they threw him down a flight of stairs and said good luck.

Schizophrenia Recreated in a Computer

How does schizophrenia develop in the brain?  What happens? Dr. Ralph Hoffman creates "hyperlearning" in computers, which then recalled stories as a schizophrenic patient might.

Hear the interview here.

"Reporting in the journal Biological Psychiatry, researchers write of modeling schizophrenia in a computerized simulation of the brain's connections, called a "neural network." Yale psychiatrist Dr. Ralph Hoffman, an author on the paper, discusses what his team has learned from the model."

 Why? To learn.  If we'd never gone into apce we'd never have the global networks we enjoy now.  To my mind - and for the 1 in every 100 people who are diagnosed with schizophrenia - the more we learn, the better.
Research is vital to understanding - and to eventually finding a cure.  We'll get every dollar spent on research back tenfold if those with mental illness can truly recover.

Schizophrenia Awareness Day: May 24, 2011

Schizophrenia Awareness Association

The Schizophrenia Awareness Assocation (SAA) in India has declared this day Schizophrenia Awareness Day. Schizophrenia affects one percent of the world's population. Not just in the United States; this is an international statistic. The Times of India has a wonderful article today, talking about recovery and the need for family and social support. Oh yes. Indeed. One quote:

"Integration of schizophrenics into the mainstream society and spreading awareness on the mental condition is important for normalcy to return. Isolation should be avoided at all costs."

Community Matters

Oh, how true this is - and how tested it has become here in our family this week.  Ben has, in the space of one month, continued at his new job (his first job in eight years), finished his six credits in college (final papers and projects), and moved into his own apartment.  That's a lot of change, and a lot of stress.  So far, so good - almost.

Families who remain involved in their loved ones' recovery know this: let go as much as you can, and keep your eyes open for signs of relapse.  This is, always, the delicate balance.

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 Demons
The Day the Voices Stopped
His Bright Light
Crazy
Beautiful Boy

Someday 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?

"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.

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.

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. 

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.

Mental Illness and Work: Capability, Dignity, Small Steps

Three hundred people showed up to a job fair this month for seasonal work at Connecticut's only zoo. 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?

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.

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.

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.

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

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.

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.

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.

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.

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.

Creative writing, then and now

Ben is taking two classes this semester: Directing 101 in the Theatre Department, and Creative Writing. The directing class requires a lot of him, things that his illness have compromised: insight into one's own emotions and the feelings of others, social awareness, stillness, complete connection. Do I tell the professor that Ben has this illness, so she is aware she needs to grade him in accordance with his disability?

And...creative writing. Ben's writing used to look like this:


- and that was before it began to look even more scattered and illegible. Now he is writing haikus, and keeping up with assignments. 200 pages of reading assigned between classes, I fear, may cause him too much stress; yet, it is his journey to complete. He is getting assignments in on time, so far - even, in one case, a day early. That requires a connection of cause and effect I haven't seen in years. Still, I want to make sure he gets a fair shake...do I write to the professor?

Meanwhile in this letter, from a Mom in England who has lost her son to schizophrenia, the story has unfortunately ended quite differently.

Ben Behind His Voices this summer!

The cover design has been chosen at last, and it makes the upcoming publication finally seem real. The exact date of publication is still tbd, but it should be in bookstores in August 2011, and available for pre-order at the end of June or by July. There are more updates available by either joining the facebook group "Ben Behind His Voices, the book", or by joining my e-mail list using the link on the home page at http://www.randyekaye.com/ - just specify the "Ben" list when you get to your choices.

Here are some advance comments, though!
Poignant, stark, and the energy of the scenes are set up really well. This work has screenplay written all over it. The dialogue is wonderful and the pace of the story moves briskly. – Nancy DeRosa, author of A Penny’s Worth, and There’s No Place Like Home

Jared Lee Loughner,tragedy, and ignoring the signs of illness

Every situation is different, I know. I cannot sit here and write about any magic formula to have prevented the tragic incident that happened in Arizona, where Jared Lee Loughner caused so much heartbreak in mere moments. But the fact that keeps bouncing around in my head is this, from a promo for Diane Rehm's NPR show of 1/11/11 (worth a listen, definitely): "The National Institute of Mental Health reports six percent of Americans over the age of eighteen have a serious psychiatric illness. A look at the challenges of identifying young adults with mental disorders and why so many don’t get treatment."